by Claire Reece.

Claire Reece documents her experiences of caring for her son Hugo James, who was born with Tetralogy of Fallot.

 

18/04/2010

Hugo was awake at his usual time of 5.20am, he has been in a very chatty mood but John and I are knackered!! He has been really good today and a bit more lively. He has managed all of his feeds well. His stoma is looking the best its been in weeks, it has lost all of the redness and the hole has become closed again. His only one problem is that his skin is very dry and sore in places, he also has had a flair up of spots on his face. We are up at the hospital on Wednesday for eye’s so I will see how he goes and if its no better drop into see his Paediatrician.

We have another busy few days ahead, tomorrow (Wed) we are in Hinchingbrooke for his eye check and on Thursday we are again up at GOSH to see ENT, its just none stop here, oh if only we had time for a holiday!!!

 

17-18/04/2010

Hugo slept brilliantly and didn’t wake until 7am – result! He has tolerated feeds ok and been a little bit more himself. His stoma site is still sore and a bit wet still, but it is not looking as red as it has been and has stopped weeping green gunk. It has been lovely out in the sunshine and I have tried to get Hugo out in his buggy and out in the back garden in his pram. Claudine was due to come with us to Tom’s christening on Sunday as an extra pair of hands and to watch Hugo while John and I did our bit. She still came for the night and day to give me a bit of company and help. It was so good of her, we had a lovely walk on Sunday and it was lovely to see her.

 

16/04/2010

Hugo gave us an extra 15 minutes sleep this morning, waking at 5.15am!! He is still unsettled and only managed 80mls of his first feed before struggling and retching. He has had calpol as he was not looking so good and that seemed to perk him up. He had 2 hours sleep this morning and when he woke was a bit happier. My sister popped round with my nephew and Hugo was extremely excited to see Jake and really trying to copy him, Jake is a brilliant big cousin and very good with Hugo and trying to help him.

He fell asleep tonight at 7pm so think he is tired out from such a busy day!

 

15/04/2010

Another 5am morning, Hugo does seem a little brighter today, although AB have really upset his tummy and he has terrible diarrhoea and a very sore bottom. Just hope he doesn’t lose any more weight because of it. During the afternoon he has become more grizzly and is again really pale. He had a 2 hour sleep this morning but then also had a 2 ½ hour sleep this afternoon which is really not like him and it took me ages to wake him up. His paediatrician rang with swab result and they show he definitely has tonsillitis. I explained he is still not quite right and she said to see how he goes over the next 24 hours and if he is no better tomorrow let them know. We have just received another appointment for GOSH on 7th May so back again in a few weeks.

We have decided today that we definitely cant go to the christening on Sunday, it is too much to ask of Hugo with him not being quite right. He has continually had infections since his hospital stay and we think it would be too much to travel him there and back in one day with him still having problems, John and I are also exhausted and with such a busy week next week it seems the only option. We are so disappointed and really sad that we cant be there, but I have spoken to Kris and they understand, it is very kind of them to be so supportive and we really appreciate it.

After Hugo fell asleep tonight he sounded very congested so will see how he goes overnight.

 

14/04/2010

Hugo has had a bad cough most of the night and was awake again at 5am. He is very congested so we took his first feed very easy and he tolerated it well.

His stoma site is still very red and sore and its needing a lot of cleaning. He is very grizzly, pale and not himself so I have been dosing him regularly with calpol and ibuprofen.

We are now thinking that we will probably have to miss Tom and Polly’s christening this Sunday, Kris and Ian live in Clacton-on-sea and we think the drive will just be too much for him with not being well. We are also at GOSH next week and that will be a long drive so it would be unfair to do that to him twice if he is not 100%.

 

13/04/2010

Hugo slept a bit better overnight, although he stirred quite a lot and has started to cough he does seem more relaxed and his heart rate was not as high. He still woke at 5am!!

We got to see his Doctor at 1pm, his weight has dropped a little down to 8.4kg so we need to keep a close eye on that. While checking him over she listened to his chest which sounds lovely and clear but she commented on his panting and we said he has been panting a lot lately. She then got some swabs and wanted to check his throat. It is covered in puss and spots, so he has tonsillitis!!! Poor baby, no wonder he has not slept well and been feeling poorly. She explained that his tonsils are swollen which is why his breathing has been so laboured and its been compromising his airway making it hard for him to breath at night. It also explains the bad breath and reluctance to have any water from his bottle (we are still giving very small sips) as his throat has obviously been very painful! He is having another course of antibiotics for seven days and we are to give him regular calpol and Ibuprofen. I cant help feeling bad for not picking up a bit quicker as he has had times when he sounded a little sore and hoarse. We got him home and started on the AB, just hope it makes him feel a bit better soon.

Tonight I gave blood for the first time. I have tried to give blood before Hugo was born but each time I went couldn’t because of having a cold. Until you see someone who is ill needing blood you don’t understand the importance of giving blood and how short the supply for it is. I lost count of Hugo’s blood transfusions at around 15, if I went through my diaries I could probably tell you how many he had, but I know it was a lot. Hugo and I are the same blood group so the need to give it was even more powerful and I have had to wait until now before giving any (can’t give it until 9 months after having a baby so missed Septembers donating).

It was easy (needles don’t bother me, I know that not everyone feels the same) took about half an hour from when I got there to when I left.

I would like to ask those of you who can give blood PLEASE do it. If one of your loved ones was needing blood you would understand how important it is. It doesn’t take much time and it could literally save someone’s life.

 

12/04/2010

Hugo had a dreadful night, he was very unsettled, and was struggling with his airway which really worried us both. We have both been up most of the night with him. He doesn’t have a temperature but just seems very uncomfortable, is very noisy breathing, panting and sounding like he has something in his airway. Finally at 5am I got him in with us and then reluctantly we both got up with him. He has only managed 95mls of his first feed. His stoma is really messy and very red and sore, he is not happy when we touch it to clean. I have given him Calpol but only when he seems to need it and not regularly. He is also very pale and has bad breath so I rang and spoke to his Paediatrician and she has asked us to bring him into see her tomorrow. I do worry that she thinks we are fussing but John said she wouldn’t see us if that was the case, but I worry anyway.

 

10-11/04/2010

Hugo has been good the last couple of days, although he is very congested and we have had to use the nebuliser on him this morning to try and loosen his secretions before his feed. He tolerated his feed well and we had a nice day, went for a walk and enjoyed this lovely weather. He feel asleep at 5pm on Saturday night and no amount of trying could wake him up so reluctantly I left him to sleep.

He had a very bad night, one of our dogs is not too well and was barking until 2am then Hugo woke around 3am very unsettled and a bit warm, I gave him some Calpol, but he sounded very congested and was very restless, I got him to sleep in my bed and when John got in at 6am he woke again. I was very grumpy and John sat with Hugo for an hour so I could just get my head down for some sleep. He definitely seems under the weather and is not himself, he has had regular Calpol and his stoma site is very yucky and doesn’t seem to be getting any better. He took ages to get to sleep tonight, he is just not himself.

6/04/2010

Awake at 5.30am full of beans, but I cant really moan considering he slept for 11 hours!

Today is a year since Hugo had his full heart repair – where has that time gone to!

Hugo was at the hospital today to have his hearing test and new mould fittings. We also took him in to see his paediatrician as she wanted to check his stoma site and weight. She has done another swab because it is still weeping and red, he was very full of beans with her and she was happy to see him so much better than the last time she saw him on the ward. His weight is still not up to what it was and is currently 8.48kg although they weighed him today with his clothes on and just after a feed so I am not sure how accurate it is. His paediatrician called today his other birthday because it is a year from his operation, which seems quite apt!

When we got into audiology they had no one available to do his hearing test – very annoying again! So just had moulds done. Now got to go back for another test in a few weeks.

Did any of you watch the GOSH documentary on BBC2 tonight. It was very good to watch, although extremely difficult at times and bought back a lot of memories. It was great to see an insight into how the surgeons and cardiologists come to their decisions.

When Hugo’s shunt failed we were told that before they operated on him it would need to be decided if he was viable for the operation and would be discussed during the consultants meeting. When the decision was made we had been told that some of the consultants did not agree with Hugo’s surgery, watching their meeting showed us just how involved they become and how much they do to come to their decisions.

It was also a reminder of the future ahead, something we really don’t like to think about.

 

5/04/2010

Had a lovely day out at Dad’s today, just went over for the afternoon. Hugo was on good form and very happy to see his Granddad. We took his walker with us as Dad has a good sized house so Hugo was able to move around a bit better than at home which he seemed to like. He fell asleep at 6.30pm and didn’t wake even when we got him in his car seat. We left him to sleep and put him to bed as soon as we got home.

 

3-4/04/2010

Hugo has been very unsettled, still got very sore looking stoma and its leaking too. He has had a couple of long sleeps. Has had a lot of secretions and has retched quite a bit during his feeds. But he has been happy in himself and it just seems to be hurting around his site and that’s getting him down. Can’t believe its Easter Sunday! John has been working all weekend so we have not done anything today just taken it easy. It is a real contrast to how we spent last years Easter in hospital and its been lovely.

Hugo has just started to crawl along on his back, something that most CHARGE children do and something his physiotherapist will not be happy with! If it gets him around we really don’t mind and its nice to have him follow you around, even if it is on his back!

 

2/04/2010

Hugo slept well apart from waking a few times, we eventually got him in bed with us and he slept until 6am. He is very unsettled today, his stoma site is looking really red, sore and is oozing lots of green puss. I really don’t think its over granulation. However swab result was negative for any infection?

He is getting very upset just by us touching it when we have to clean it, it is obviously hurting him. He was fairly settled over the evening and was playing a lot with me, by the time John got up and went to work I was knackered, I got Hugo in bed and then went for a sleep until his feed was due at 10.45pm. Finally got to bed at 12am.

 

1/04/2010

Today has been a very long day. We left home at 7.30am, Hugo didn’t wake until 7am so we did his first feed on the way, we had to stop it for a while and then re-start it and then we stopped at the South Mimms services as Hugo was becoming very upset. Realised once there that he had dreadful diarrhoea (antibiotics!) and it had leaked out of his nappy all over him and his new car seat!! Not nice, and a horrific mess to clean in a service station car park – honestly is anything ever easy!!!

We got to GOSH at 10.30am and headed in for our appointment. While we were waiting we bumped into a couple we had been in Intensive care with when Hugo was first born, there little boy Alfie is a few weeks older than Hugo and it was fantastic to see them, Alfie is gorgeous and was totally full of beans and really interested in Hugo, he kept trying to touch Hugo’s face – very cute!

Once in clinic we discussed the reasons for us coming in to see them. Basically the type of feeding tube that Hugo has would usually only stay in for around 18 months, however if they are working well and not having any problems they can leave them in. In regard to Hugo, although he has recurring infections the tube is working well with no damage or blockages. Because of his heart condition and the complexity of his other conditions they would not want to give Hugo a general anaesthetic just to change the tube. He is a high risk patient and it would have to be a case of only doing it as a absolute necessity. This is great news to us as we had been worried about him having an anaesthetic and now we can relax, his tube will stay in place until it effectively becomes unusable.

While at the hospital we managed to also bump into his lead intensive care doctor who was so pleased to see him and we got him out of his buggy so he could have a big hug – that made my day and by the look on his face, I hope his too! We also then bumped into him a bit later with one of the other cardiologists. We also saw a few of his old nurses and the hospital Chaplin.

Duncan the photographer was also in the area so managed to meet with him for a coffee too, Hugo was obliging to him and his camera as was I!!!

We also had a coffee with one of Hugo’s nurse’s from his time in the hospital, it was so good to catch up with her and I think she was surprised by how big Hugo had become.

Unfortunately we hadn’t taken into consideration that it was a bank holiday Friday so we left at around 3pm but it took us just over 4 hours to get home! Luckily Hugo was very chilled and sat happily in his car seat all the way home.

 

31/03/2010

This morning we met our Occupational Therapist for the first time, she came to assess Hugo and see what his needs are and what he might need in the way of equipment at home. We will be getting a bath support to help with bathing him. Because Hugo still can’t sit unsupported John and I still have to bath him together, he must not swallow the water in case he chokes and we also have to watch that his gastrostomy tube doesn’t get pulled so it can be quite tricky at times. She is also getting us a special support chair for him to sit in to help with his posture and make it easier for feeding him, and for him to sit at times to play with his toys. She was really nice and very helpful guiding us with what we will need to look at for the future, she has also discussed us moving and what we will need to look at house wise for Hugo’s needs.

We had managed to get an appointment with the ophthalmologist at Hinchingbrooke. His right eye is showing signs of being very dry, it also has a slight film across it and at times looks like it has a lot of dust on the surface, we were worried about this. Because Hugo’s right eye never close’s even when he is asleep we have always had to lubricate it and his current drops obviously are not working, they have given us some new ones and we are to start putting a thick ointment in at night when he is asleep. We have another appointment in 3 weeks and if the eye has not got any better and is still drying we may need to either tape it shut at night or look into some other way of keeping the eye moist. They have also told us that we need to go back up to GOSH for his care as well.

His stoma site is still very yucky. We are going to see what it looks like tomorrow and see what they think of it at GOSH and then chase up his swab results to see if he needs to change antibiotics.

 

30/03/2010

I had a hospital appointment this morning. John and Hugo came with me. Hugo’s stoma is still red and sore so we took a swab and took that with us. On the way Hugo’s paediatrician phoned, she is going to start antibiotics and cream for the site, she will send the swab off. She is happy with the diuretics dose, normally a child would not react so quickly but Hugo is obviously very sensitive to the medication so it makes a difference quite quickly with him. I mentioned his heart rate dropping and she is going to speak to his cardiologist about doing a 24 hour ECG to monitor him.

 

29/03/2010

Hugo woke at 3.45am and would not go back to sleep, John and I are exhausted and ended up getting a little uptight with each other, which doesn’t really help! He finally fell back to sleep at 5.30am and woke again at 7am.

Hugo’s visual impairment teacher came this morning, she is happy with Hugo and feels that he is progressing well. His development is slow and he is behind on his age group but that is to be expected, she feels he is around the age of 10-11 months in his development. His right eye has become very dried out and I mentioned to her, she suggests we speak to the ophthalmologist at Hinchingbrooke about getting it checked, so I rang them and tried to get an appointment ASAP, I am waiting to hear back from them.

Hugo’s stoma site is looking red and infected again, will see how it looks tomorrow. His heart rate during sleep has again been very low again, tonight it is hitting 57 bpm at one point, I am waiting to hear back from his paediatrician to see what she thinks.

 

27-28/03/2010

Weekend has been ok, Hugo has been unsettled at times, he is still pale but must be feeling better as he is very playful. He has cut another tooth and is chewing anything and everything! Only problem is that because he is producing more saliva from teething he is struggling to swallow it and we had a little problem with his feeding in that he kept gagging, however once his feed was stopped he seemed to recover.

 

26/03/2010

Hugo didn’t wake until 5.15am, a bit of a little lie in!!! although he is still very pale he has had a fairly settled day and seems more himself. We noticed last night that Hugo was very thirsty and his fontanel (soft spot on the top of his head) was really sunken. He had also been weeing a lot more than usual. John suggested that he might be on too high a dose of diuretic now his weight has gone down. We didn’t give him his evening dose and this morning I rang the hospital to ask if we should reduce the dose ( This morning I have given the old dose from his weight of 8.28kg) hospital got back to me early evening and agreed he needs to reduce his dose. Hugo is really clingy since coming out of hospital, every time you put him down he is sobbing his little heart out which is really unlike him, he is obviously feeling very unwell still and possibly insecure?

John and I are shattered at the moment, thankfully John’s Auntie Di has kindly offered to come and spend the weekend with me so John can work. She arrived at about 6.30pm with a Thai meal!!!! What a star. Hugo remained settled for the evening, although around 11pm his monitor kept going off as his heart rate was dropping quite low – around 63-64bpm. So kept a very close eye on him and will speak to the hospital on Monday.

 

25/03/2010

Hugo’s weight has dropped from 8.6kg down to 8.2kg, which is quite a drop and not really good news, we are trying to increase his feed volume again as he has only been having 100mls per feed and so have gone up to 110mls today, we will see how it goes. But he is much happier today and definitely more himself.

We have today received a letter from GOSH with an appointment for Hugo to see the general surgeon next Thursday about a date for changing his gastrostomy tube, this is something we are not looking forward to as its a general anaesthetic but at the same time we want to have it done as soon as possible. Hopefully we might get a date when we are there.

This week has been a bit of a low point. On the plus side we are so pleased Hugo is home safe and sound, but it has been a draining experience. I will never complain about caring for Hugo, as I have said many times in my emails. But I have to say that at times I expect it to get easier and that isn’t so. With him having so many complications we are always having to monitor him, especially signs of his heart deteriorating. We now don’t regret our decision to keep Hugo out of nursery and play groups. The Doctors have congratulated us on keeping Hugo out of hosptial, but its not something to be pleased about, we don’t take Hugo out to anywhere that he might pick up an infection, and as you all know, we always ask visitors if they are bug/germ free. Its not easy to do that and although Hugo doesn’t miss out on anything, and is so happy with his daily routine, I find it hard not being able to do ‘normal’ things with him.

However after this last week, I know why we go to such lengths. Hugo became unwell very quickly and its because of the wonderful staff who are always so quick to see him and treat him that we have been able to come home so quickly.

 

24/03/2010

Hugo had another unsettled night and was awake at 4am very unsettled and crying a lot again. We couldn’t get him to go back to sleep and so stayed awake with him and finally bought him downstairs at 6am. Once in his highchair with his toys he was fine and very happy!!!

He became a little unsettled at midday and had a temp of 37.6° c so I gave him some calpol and he fell asleep. We had a lovely visit from Claudine today, she should have come for a night but with Hugo being in she felt it was best to just visit for the day and give us some time alone. It was lovely of her to come and she even did my hovering, which was very kind of her and very much appreciated!

Hugo woke at 1.45pm and was much more chatty and himself although still so very pale. He has tolerated all of his feeds today although still has a very upset tummy, but no vomits so that is great news. He had a lovely bath which was his first in days and he loved splashing the water. He fell asleep at 7.45pm and I was not long behind him in getting to bed.

 

23/03/2010

Hugo woke at 3am crying and seemingly in discomfort, he is drawing his legs up and obviously has tummy ache. We gave him some calpol and he fell asleep at 4am, but woke again at 5.20am still very unsettled. The nurse checked his obs and his temperature was at 38.1° c, so he had some ibuprofen. He was very grizzly for a time but did eventually settle. I was desperate for a cup of tea but didn’t want to leave him and there was no one available to watch him so had to wait until John arrived. The play specialist came by and after a little chat disappeared off and got Hugo a big play mat, and some toys to lay out on the floor for him. It was wonderful as I think he was fed up in his cot and the minute he laid on the mat on the floor he had a big smile on his face and settled down. By the time John arrived he was very happy and settled. He had his feed which he tolerated well and then finally at 12pm he fell asleep, so we went to the parents room for a cup of tea. (we take our baby monitor to the hospital with us so we can hear Hugo and rush back to the room if he wakes, we don’t like leaving him alone when he is awake. Its great as your not worrying about him and don’t have to madly gulp your tea down!)

Doctors want to discuss his temperature with Hugo’s paediatrician and are now saying that he will not be discharged today!

Hugo had his ECHO at 3pm. There is no change with his heart, it has not got any worse though which is a good thing and they are hoping that this bug has not effected it too much. There is still regurgitation back into the heart but no major signs of deterioration which is good to hear.

Hugo’s paediatrican then said that we could go home, he is over the worst and she feels we can manage him better ourselves at home, obviously she gave us the option to have another night on the ward if we wanted but we agreed that he would be happier at home.

She came up and took out his cannula and then got our discharge details sorted. Once his antibiotics had arrived from pharmacy we were able to take him home and left the hospital at 5pm.

It was good to get home. Although I found myself a little emotional, this week has knocked my confidence a bit, we had become so complacent with Hugo and his cares that had honestly forgot what it was like to see him so poorly and unable to do anything to help him. I also find it hard as the staff wont let me draw up his medication when we are on the ward so it is usually late and when I started to do his evening meds I found myself having to double check them all to make sure I had all the dose’s correct. I hate not doing his bits and although I can see why it has to be controlled on the ward I do find it difficult.

 

22/03/2010

Hugo slept very soundly right through until 5.10am when he had a wet nappy, he then fell straight back to sleep until 6.40am. He looks brighter today and his puffiness has reduced and he is a better colour. He was stayed on continuous feeds for the morning until the doctors had reviewed him. His paediatrician is back in today and she came in to see him quite early. She checked him over and is quite happy with how he looks, I explained about the puffiness and she feels it could be possibly where he has been laying still for a few days. His liver is not enlarged and he shows no other signs of problems with his heart. She wants him to remain on IV antibiotics for today and see how he goes overnight with his feeding and so on.

His swab results have all so far come back as negative on anything, which is so bizarre as they had expected something to show up! Seems to be Hugo’s old trick of being unwell but not showing what is wrong. As he had done on occasions at GOSH.

We had a group of medical students on ward round who had never heard of CHARGE and they asked to come back and speak to us about Hugo and his condition, which we agreed to. They were very interested to learn about his problems and the journey he has had so far.

Although his temp is down Hugo has really not been himself today and is very unsettled and still suffering from exhaustion, he is sleeping every 2 hours.

Hugo’s doctor has decided to do an ECHO on his heart tomorrow just to make sure that all is ok, she came and had a long chat with us late afternoon and to check on Hugo. The plan tomorrow would be to see how he goes, move him onto oral antibiotics and possibly go home with him.

She is also writing us a letter to have at hand in case we ever have to call an ambulance again to say why Hugo would need assistance in getting to hospital.

 

21/03/2010:

Hugo woke crying at 4am, I changed his nappy and let him have a small sip of water from his bottle. As he grabbed it he was shaking which I found a bit odd. He quickly fell back to sleep and so I went back to bed. He woke at 6am when the nurse did his obs but was still very sleepy. I noticed that he was looking puffy around his face and eyes, and mentioned it to the nurse who agreed with me and got the doctor to come and look at him. They want all of his fluid stopped until he is reviewed during ward round.

During round the doctor said that he is fairly happy with him, he was weighed and his weight has only increased by 90g so not a big increase which is good. Not sure why he was shaking, possibly not having any feed. They want him to try having a proper feed to get some nutrition back into him.

As the day went on Hugo seemed to deteriorate. His puffiness seemed to worsen and he slept all day, waking for half an hour at the most. John and I began to really worry about him, and it was scaring us. We can’t understand why he is still so ill. By late afternoon we requested the doctor again, Hugo was still sleeping, and listless. She checked him over and decided to do more bloods and a chest x-ray. There was also a concern that Hugo could have ITP (a condition of having a low platelet count). This came back negative. We tried him having a feed at 11am which he didn’t tolerate, but when they did his bloods at 5pm they also did a blood sugar level which was low so we decided that he needed some food, he obviously had no energy plus exhaustion. We gave him a small feed at 6pm which we watered down and he tolerated it ok. We managed another at 9pm and then gave him continuous feed overnight just to get some fluid and calories into him. His bloods came back ok as did his chest x-ray so there are no underlying problems which is a relief, I think that we just need to let Hugo get himself back to normal and just monitor him.

 

20/03/2010

Hugo woke at 4.45am, he seemed quite bright although was warm with a temp of 37.5° c so was given calpol. He then became very upset, sobbing his heart out, so unlike him L .

Because he didn’t settle he was given some ibuprofen. He still has diarrhoea but has not vomited and kept the fluid down. His chest sounds clear and on ward round the doctors are fairly happy with him. They want him in all weekend, seeing how he goes so we will stay until at least Monday. His temperature has reduced throughout the day and he seems quite comfortable. He is certainly not his normal self but coping ok. When the nurse went to give him his antibiotics his cannula would not work so he had to have another one put in. unfortunately the doctor couldn’t get one in and it took him three attempts, poor Hugo was very distressed. His fluid is running continuously overnight to make sure he is dehydrated and he fell asleep around 7pm.

It has been very odd being back in hospital but at the same time, a bit of a break for John and I. We didn’t realise how much we were doing with Hugo’s day to day care and how much it had worn us out. Having the help in here from the staff has been a big relief and in a way a bit of respite for us. John is getting an okay nights sleep (actually getting 5 hours in a row!) and I am having a bit of pressure taken off me with Hugo’s daily routine.

 

19/03/2010

Hugo has had a settled night, sleeping well. His temp is still raised this morning at 38.5° c and he has had calpol at 6am. At 8am his temp was 38.1° c so we put a fan on to cool him. The nebuliser helped to loosen his secretions and although he had a small vomit after his feed finished it was manly secretions and not much food. He tolerated his feed at 11.15am with no problems. I went to bed for an hour at 2pm as I am so tired.

John woke me about 3.30pm as Hugo was struggling with his feed, I rang through to the hospital to see if Hugo’s blood results were back and let her know that he is no better. His CRP (infection level) is up which means that he has some form of infection and also his bilirubin (liver functions) are also slightly raised. She wants us to keep a close eye on him and ring through to the hospital tomorrow to let the ward know how Hugo is doing.

No sooner had I put the phone down and Hugo had a very bad vomit, we tried to suction him, but every time we cleared him, he vomited again. He then had terrible diarrhoea, so I rang her back and she told us to bring him straight down to the hospital. Hugo then again vomited, he was starting to really struggle with his airway, was very pale and had become very tired. We had got him attached to his heart monitor and his heart rate was around 159bpm and his oxygen saturations had dropped into the 80’s. John and I were not coping and failing to keep Hugo’s airway clear. John told me to ring for an ambulance. It had become very frightening and I called 999. I explained the situation and we were told that someone was on their way. It was a good 10-15 minutes before a rapid response vehicle arrived. Hugo had started to pick up a bit, but his heart rate was still high. When he arrived we explained the situation and he seemed happy with Hugo, although he didn’t actually check Hugo over. We told him that we were supposed to be taking him to the hospital and he said that he felt we would be ok to go. John said to him that we were not happy with driving him because of his vomiting we were worried that if he vomited on route I wouldn’t be able to suction him myself and John would have to pull the car over to get out and help me. Thankfully by now the ambulance had arrived and one of the paramedics is an old regular customer who quite happily agreed to take us to Hinchingbrooke by ambulance.

We arrived just before 5pm and went straight up to the ward. The staff were surprised to see us arrive by ambulance and took charge of Hugo very quickly. He was continuing to retch and empty his tummy, his obs were done and his temp was now 39.6° c. Hugo’s doctor decided that he was really not looking so good and felt that John and I had done as much as we could manage at home and that he needed to be admitted. (we didn’t disagree) She also felt he needed to be given intravenous antibiotics because we couldn’t tell how much he had adsorbed. Hugo was so brave when they put his cannula in his foot. (a line into his vein to give him his medicine) Although he got very upset he stopped crying as soon as it was done. We were moved into a room and once in his cot he quickly fell asleep utterly exhausted. We felt that he would be better not having any more feed and he was put onto dioralyte to re-hydrate him. He was monitored closely overnight and given antibiotics.

 

18/03/2010

Another bad start to the day. Temperature of 38.4° c, very bad diarrhoea which had covered his stoma site (not good, as likely to cause infection!) gave calpol and waited for good half hour before giving his feed. Temp was still rising and now at 38.8° c. Gave small amount of feed then a break before giving another small dose. Managed to go 40 minutes before having another very bad vomit! Hugo is now retching and has a lot of thick secretions. Decided to cancel all of his appointments today as he is not well enough to attend. We still took him to see his paediatrician, as we are a bit concerned as to why he is still unwell.

Hugo had a chest x-ray as his chest is a bit rattly, this was clear. We have done viral swabs of mouth, nose and throat and a stoma swab to check for infection. His temp was still high, 37.9° c and he has also had full bloods taken. We have also been given a nebuliser with saline to help loosen his secretions.

By the time we got home Hugo’s temp was 38.4° c so I gave him another dose of calpol. He settled better than previous nights and fell asleep at 7pm.

 

17/03/2010

Hugo is not well! He woke at 4.45am with a temperature of 37.9° c, he was very distressed and desperate for a drink, he is very pale too. His feed started but he had a bad vomit partway through (even though we took it slower than normal and have reduced the volume) and his breathing became compromised as he has lots of secretions in the back of his throat, he is still having regular doses of calpol and ibuprofen.

We rang through to Hinchingbrooke at 8.30am and Hugo’s paediatrician wants to start antibiotics. He perked up a little around lunchtime and later in the afternoon I rang to see whether they still wanted the antibiotics to start? Paediatrician wants them started regardless of how he is looking, just to be on the safe side. Again became unsettled at bedtime getting really upset again.

 

16/03/2010

Hugo is not himself, he woke at 6.45am with a temperature of 37.8° c. I gave him calpol, but he is very unsettled and congested. He only managed 89mls of feed before it became too uncomfortable for him. At 8am his temp was still 37.7° c. He fell asleep at 9.30am and slept for 3 hours! When he woke he was still pale and congested so we decided to ring and speak to his paediatrician. We explained all of the details about our appointment yesterday at GOSH and explained that he is really not himself. She asked us if we wanted to bring him in for a check, so we said we would bring him down at 3.30pm.

Hugo had a full check up, all of his obs were good, his chest sounds quite clear as well which is good. Discussed him restarting reflux medication, so he is now having gaviscon in each feed and also re-starting Landsoprazole which is a medication to stop acid reflux. We are not yet going to start antibiotics, just wait and see how he goes. We are going to bring him back in on Thursday for a check up after his other appointments with ophthalmology and audiology.

We are finding it hard not giving him much water from the bottle and he is getting quite distressed about it which is making us feel pretty bad.

Once home we bathed Hugo, but he became very unsettled, unlike him. He started to cry and became dreadfully upset, very unlike Hugo! He cried for about half an hour then finally fell asleep exhausted. Today both John and I feel very drained. Yesterdays news is still sinking in and we are still upset by it all.

 

16/03/2010

This is probably one of the hardest updates I have done for a while.

Hugo has had an fairly unsettled few days, we think it’s a reaction to his vaccine. He was very clingy on Friday (12th) and had a slight temperature.

He slept badly and remained unsettled overnight. When he woke on Saturday morning (13th) he seemed ok, however after putting his feed on, we got to 67mls and Hugo had a very bad vomit. Firstly the vomit was orange and smelt dreadful, I straight away realised it was full of stomach acid. I tried to suction him, but couldn’t do it alone so called John (who had just come in from work) we managed to suction him, but unusually he didn’t fight us and became very pale, sweaty and unresponsive, which worried us.

We continued to clear his airway and then John got the pulse-oximeter to check his obs. His heart rate was 144bpm and Sat’s were 97% so ok. By now Hugo was starting to become more responsive and his heart rate was settling down. This really knocked us, John worried that we might have needed an ambulance, but Hugo recovered enough for us to manage without the help, although not without us being a little shook up. I suppose we have become slightly complacent with our day to day life and because Hugo has had a good run of being well, we had become used to our ‘good’ routine.

Because of the acid, I gave Hugo a dose of Gaviscon which made a big difference, you could see it relieve him which is good. He remained settled although not himself for the rest of the day.

Sunday 14th, he was much better and back to his happy Hugo self.

Yesterday (15th March) we were at GOSH with Hugo to see the Neuro-disability clinic in regard to Hugo’s feeding problems.

What a day we had. We had to leave home at 10am, our appointment was at 2pm. We made good time and arrived in London by 1pm. Hugo had been brilliant on route, he had a feed and slept for a while so was refreshed by the time we arrived.

Bizarrely enough, while sat in the car waiting for our appointment we noticed the photographer who has been taking photos of Hugo wondering down Great Ormond Street, he was over the moon to see us and did some more piccies of Hugo!!!

We took a little visit up to the wards to say hello to the wonderful staff who looked after Hugo during his time in the hospital and he was a little show off. I hope the staff were as pleased to see us as we where them!

At 2pm we arrived at our appointment. Present was the Neurologist and a speech and language therapist. We ran though how Hugo has done since the Neurologist last saw him (back in May 2009) we also discussed his feeding issues. I had a disk copy of Hugo’s video swallow test done in October and had bought it with me in case they hadn’t seen it (they hadn’t).

They wanted to see Hugo eating and drinking. While doing this the speech and language therapist listened to Hugo’s throat to hear how he swallows. During both she heard significant signs of Hugo not swallowing properly. They then viewed the video swallow, and were not happy with what it showed. As we know, he does have small aspirations. The major concern today is that Hugo is showing signs of silent aspiration i.e.; not coughing or choking when water/food goes down the trachea (wind pipe).

In medicine, aspiration is the entry of secretions or foreign material into the trachea and lungs When it occurs in eating and drinking, the food or drink in question is often colloquially referred to as “going down the wrong pipe.”

My answer was that he has not had any chest infections so it can’t be doing much harm.  Sadly this is not the case. Eventually his lungs will start to become infected by the food and water going into them, but if this takes time then they could become quite damaged.

The Neurologist has seen this happen on many occasions when there is Bulbar palsy present. We suggested a new video swallow to see if he is properly aspirating because of how well he takes the bottle now. They feel this would not help as he is definitely not swallowing properly.

The problem with Hugo is that the Bulbar palsy he has is a neurological problem and therefore will never get better.  Just to explain Bulbar palsy a bit better, I have copied and pasted this off of Wikipedia:

Bulbar palsy refers to bilateral impairment of function of the lower cranial nerves IX, X, XI and XII. Bulbar Palsy is an assortment of signs and symptoms.

Symptoms include

•        dysphagia (difficulty in swallowing)

•        difficulty in chewing

•        nasal regurgitation

•        slurring of speech

•        choking on liquids

We asked what the long term aspect is for his feeding.

Will Hugo ever eat?

Will he be able to sit and have a meal with us?

Sadly the answer is that Hugo is not safe to eat properly and that is unlikely to change because its Neurological. We were told ‘Hugo will never be able to sit and eat a proper meal with you both’

The neurologist is also very concerned about Hugo’s continuing vomits, especially if he is having a lot of acid reflux. She wants him to immediately go back onto his reflux medication to lesson the chance of any aspirations of vomit or acid in his lungs which would do serious damage to him.

We have been advised to stop allowing him to drink from the bottle freely. Ideally they would rather him stop completely but understand that Hugo is very attached to his bottle now and wouldn’t want to take something he enjoys away from him. We must now monitor him, we are not allowed to give him much water, definitely not the quantities we have been letting him drink and we must only let him have a tiny sip at any one time. We must also go very carefully with the purees. If he is ill, under the weather or not interested then we must not give him any.

As you can imagine this is very sad news for us. Yes we have to remain positive.

One thing that scares me is that I love food (as some of you who remember my larger days will know!!!) and it devastates me that Hugo will never get to eat a meal and taste the wonderful tastes in food.

I know some of you might say that we must remain positive and not give up yet. We spoke to the Dr about this, she said the hardest thing for parents is other people saying  that we should wait and see as he gets older.

Hugo has too much against him. CHARGE syndrome gives most children swallowing issues, and to have the Neurological problems as well all stacks against him. Put simply, he is not wired up properly and the ones that should help him feed and eat don’t work.

On a more positive note, she was pleased with physical development. His lack of movement (not crawling, sitting, standing or walking) are almost certainly because of his Neuro problems and we just have to wait and see how he will progress with them. We have been advised to see and Occupational therapist now in case he needs any mobility aids long term.

Hugo during all of this was a little star, showing off and being very vocal and waving his arms about. He did eventually fall asleep and was just perfectly behaved.

John and I are very sad about this news and although as always we will keep our chins up, it doesn’t mean that we don’t feel terrible disappointment that Hugo has these problems.

 

10/03/2010

Hugo has had his MMR vaccine and  vaccine today. So far he has shown no reaction which is good. We had a visit from our portage worker, we had to rush her visit as due to going for the vaccine’s but she was generally checking all was ok on our side. I am finding things a bit difficult this week. Life at times feels such hard work. Hugo’s cares remain 24/7 and it does take it out of you. I don’t have any problem with caring for him – he lights up my days, its just tiring work at times. Hugo has only had a half hour sleep all day, so I am hoping that he sleeps all night

 

9/03/2010

Hugo slept until 6.40am this morning, such a good boy! He has had a good day, had a very little vomit with his first feed, but he coped well with it. He again tried to help me with his suctioning! He has been a little grumpy at times and I’m unsure it is just because he is tired. He has played well today and enjoyed being in his baby walker, he can now actually walk along in it so is now getting the hang of what it does.

 

8/03/2010

Hugo’s teacher of the deaf came in this morning. He is again happy with how Hugo is doing. He checked both his hearing aids, although we are still not wearing the right aid as it keeps falling out of his ear. We have a hearing test on the 24th so his hearing teacher is going to come along to that too. Hugo has been well today and we have had a good day, tolerating feeds and very well settled.

 

6-7/03/2010

We have had a good weekend of nice walks and enjoying the fresh air. Hugo has been well, tolerating feeds and very settled. He has slept well too so I am hoping that we are over the bad few nights sleep. John has been at work all weekend so I am here alone, but we have managed fine. We heard some very sad news on Sunday evening. The little girl who we have made contact with in Wales passed away today. It was unexpected and is very sad news to hear.

It makes us again think of how vulnerable Hugo is. We try so hard to keep him away from infection risks and do our best to protect him. It also makes us think about how precious life is and that its not here forever.

 

5/03/2010

Another easy day with no problems and tolerating feeds well. We had to give him a little suction during the evening as he drank too much water and coughed some back up. When I suctioned him, he took the catheter out of my hand and put it into his mouth himself! It was such a lovely moment, he obviously understands completely what we do to him and why it helps.

 

4/03/2010

Hugo has had a good day, a little breathless during his feed, but otherwise on top form. He is in a very chatty mood today and really happy.

 

3/03/2010

We have had another restless night with Hugo waking at various intervals! We are both a bit tired at the moment. He is still a bit breathless, we have noticed that he is drawing his legs up when he is in his cot. He has also got very dry skin at the moment so I’m not sure if its connected in any way?

 

2/03/2010

Another unsettled night of Hugo waking every hour, we eventually put him into bed with us and he finally settled around 4.30am. He woke for good at 5.45am. He tolerated his first feed fine and had an settled morning. We had a visit from Di and Anne today which was lovely. Hugo was spoiled with attention by his Nana’s and really showed off for them. He had his 2.30pm feed, at 67mls he suddenly vomited and became very distressed. We had to suction him quite a bit and he became very upset and struggled with us and clearing his airway. He became pale and very upset and took about 20 minutes to settle back down. However once he had recovered he became full of beans again and happily played until late into the evening. He tolerated all of his other feeds fine, but he is still a bit breathless at times.

 

1/03/2010

Into March already!! Hugo’s physiotherapist was here this morning, she is impressed by how Hugo is doing and thinks he has improved again. He was really showing off for her today!! He was also very very nearly crawling for her. He is panting a bit today and it is more noticeable after a feed or sleep or when he is exerting himself. We are again taking notes and seeing how he goes before ringing his paediatrician. We have just got Hugo a big boys car seat. He has finally got big enough to have a forward facing seat and leave his baby carrier, so we took him out for a little drive today to try it out. Hugo loved his new seat and fell asleep in it, so it must be good!

 

27-27/02/2010

Tough overnight, Hugo woke at 3.40am with temperature of 38.4°c, his heart rate was 145bpm and he was very unsettled. He was very upset, so I gave him calpol and after about 40 minutes he settled, although I had to put him in my bed with me. He woke again at 6am still quite hot and a little unsettled so gave him a dose of Ibuprofen.. He remained settled for the rest of the morning. During the afternoon he has been a little congested, but is happy and playing well with his toys. He was sitting quite well today in his special sitting ring and trying to sit forward on his own. He was on good form Sunday, a little congested and a bit croaky and he is sweating again. We have tried some puree tasting again but he is still not interested.

 

26/02/2010

First feed this morning resulted in another small vomit. Hugo managed well though and did continue after he had been sick, I think it was again secretion related. He had a bath this morning and afterwards I turned his G-tube, it was a little tight to turn, but eventually turned fine. He has spent a bit of time this afternoon in his new walker, he is now starting to get the idea that you also can walk with it not have to stand still!

 

24/02/2010

Hugo slept until 7am!!! A lovely lie in! Today has been an easy day and we have not done too much, Hugo is quite pale today and is still sounding congested. He is also sweating a bit too, I rang and spoke to his paediatrician and we are increasing his diuretics to see if that makes any difference, we will keep an eye on him.

 

23/02/2010

Hugo slept well, he has been ok overnight and tolerated feeds well. We have reduced his volume just as a precaution in case he is struggling with the volume. He has quite a few secretions but not too worrying and hasn’t needed much suctioning.

 

22/02/2010

Hugo had a good night and slept until 6am after a little wake at 4am for a drink. Had a little problem with his first feed, he got to 68mls and had a small vomit. He has got a lot of secretions so wonder if that was why. He is also panting quite a bit at the moment towards the end of a feed and after, also when he wakes up or is sleeping he is sweating again. We actually took him out today to the shops, we were buying his new car seat and decided to take him. It was lovely to get out and about with him, although we were very careful about where we went. For the first time since leaving hospital John and I had a coffee in a coffee shop together with Hugo. How mad is that!! It was so lovely doing something so normal just the

three of us and a big step forward.

When we got home we bathed Hugo, we are now brushing his teeth and he really likes it, so much so that today he took the toothbrush out of my hand and did it himself!!

Once he was bathed we got him ready for bed and then got his feed on, he was happy playing with his toys and fine. His feed finished and literally before I could flush him off he vomited the whole feed back up again!! Poor little lamb, we hope that he is not brewing anything as he has sneezed a lot today. Had to suction him quite a lot and not long after he fell into a very fitful sleep.

 

20-21/02/2010

Its been a busy weekend! We had visits on Saturday from my Dad and Nan and then Carol and her Mum. It was lovely to see them all and Hugo as always loved the attention. He is still sneezing a bit and has a little cough, and had to give him a dose of calpol on Saturday but he is otherwise full of beans and on top form.

 

19/02/2010

Hugo has had a good day today and is very lively and full of beans, John and I are both really tired tonight and the upside of that is that John has decided not to work tonight, so I won’t be here alone. In the last week I have made contact with a Mum in Wales who has a little girl with CHARGE. She is 16 months old and has almost identical symptoms to Hugo, including the Dandy Walker which is the first time I have come across someone else with it. It is nice to speak with someone who is pretty much going through the same thing as us.

 

18/02/2010

We have taken a big step forward with Hugo the last week or so with how he takes a bottle. He is now averaging about 80mls a day. However he is still not taking any solids we have tried and tried to get him to take any form of puree, trying lots of different flavours and types, but he just doesn’t want to taste. We are not giving up and keep trying daily.

 

17/02/2010

oday we had our first day out since we came back from Center Parcs in January, we went to visit John’s Aunt’s in Aylesbury. It was a long drive but worth it, We had a great day, Hugo was spoiled and very settled there. We also had a wonderful roast dinner – yum! That was worth the drive alone!! Hugo tolerated all feeds and was very settled and asleep by the time we drove home. A great day!

 

16/02/2010

A 5.30am morning, wow a lie in!! Hugo is on top form today and very chatty and playing really well. He has been in his activity station and really trying to get into a crawling position. He has also been giving me very sloppy wet kisses. We had a lovely walk and he fell asleep and slept all the way round. Had to wake him once home to have his bath. John helped me bath it and he loved it. He didn’t fall asleep until 9pm so I am hoping for not such an early wake up???

 

15/02/2010

Hugo has had a dreadful night of being awake. John looked after him until 3am then I took over. He finally woke properly at 4.45am, he was a bit thirsty so I took him downstairs, feeling quite tired and stressed out today. Thankfully he fell asleep at 9am so I put him back to bed and also myself too!!!

My nephew visited today with my mum and Hugo was in awe of his big cousin. Jake is so very good with Hugo and although he is very careful about Hugo’s feed tube and not being too rough, he also treats Hugo no different to any other child. He was trying very hard to make Hugo laugh and succeeding very well. He has been a bit hot and grumpy which I think is his teeth so I have given him some calpol and that seems to have done the trick.

 

13-14/02/2010

A long weekend, John is working and Hugo has been very unsettled. Not sleeping well and he has been waking at around 4am each morning, so I am very tired. On Saturday night I took him up to bed to see if he would sleep and when he wouldn’t I got him into our bed and we both fell asleep!! Sunday he was much more settled and full of beans.

 

12/02/2010

Hugo has started to cut his third tooth!! He has been quite happy today playing lots with his toys and really rolling over today to get to them. He is tolerating his feeds well and stoma site looks good still so think we are definitely over the worst now.

 

11/02/2010

Hugo waking up really early again at the moment, so feeling tired today! He is definitely teething I think as he is trying to bite everything!!! Stoma site looking good so fingers crossed he stays off the antibiotics.

 

10/02/2010

Hugo was very unsettled overnight, he woke at 5.30am with a temp of 37.8°c. I gave him a dose of calpol. He is coughing a lot. I got him downstairs and put his feed on, he only got to 70mls before vomiting it all back up, poor little mite. He was unsettled for a while but eventually settled back down.

He has had his visual impairment teacher here with our portage worker today. By the time they arrived he was on much better form and was very responsive. She did work on his grasping and taking things and how he watches his toys. He managed to sit for around twenty minutes with me just sat behind him for a bit of support. They were both very pleased with his progress. Afterwards he began to get very grumpy and I put him down for a sleep. Once he woke he was much brighter, he had tolerated his feed well and had no temperature.

I tried to ring the community nurse about his stoma swab results, but had no luck getting hold of her. I then rang our GP who got straight back to me, he has had mixed coli form, which is again a form of E-Coli. Because his antibiotics were due to stop my GP advised speaking to his Paeditrician to check he didn’t need another course, but she feels that the site looks good and we can stop them for now

 

9/02/2010

We have been to Hinchingbrooke today for Hugo to have a check up with his paediatrician. We also had an appointment with the dietician first. When we spoke to her about trying to reduce Hugo’s feeding time because of the length of time we spend with him while feeding. (obviously when he has tolerated the change in new feed and is well) she suggested that we might be better trying continuous feeding????!!!!! As it sounds, continuous feeding would mean Hugo stays connected to the feeding pump all the time, why that would help us is beyond me

So onto our meeting with Hugo’s paediatrician she is more than happy with Hugo today. He has been on good form apart from his cough and showing off quite a bit. We have discussed his recent sickness episodes. He seems to be picking up more infections at the moment, whether its because he is a bit run down we don’t know, although she is happy that he is fighting them well. However he has been on antibiotics quite regularly and we are showing regular infections in his stoma site so he is obviously struggling to hold these infections off. She has been unable to get his last results so I have to ring the communtiy nurse when I get home.

She has suggested that we should still take extra caution with Hugo and taking him out or into places. Even though he is now a bit stronger he is still very vulnerable. She doesn’t want us to take him into a playgroup or children’s groups just yet and she feels we should wait until the summer time before really introducing him into any groups.

We have also discussed our visit to GOSH in to see the neurologist and we are now starting to discuss Hugo having his gastrostomy tube changed. It needs to be done before October and obviously we want to start planning for it. Hugo will have to go down to GOSH for it and it could involve an overnight stay, although if he is really well then he may just be in for the day, it depends on his cardiologists and whether they will be happy with him going home after having a general anaesthetic.

We are now not seeing her for six weeks, fingers crossed that he stays well and we might just manage it (although I don’t know if we really will manage personally – seem to have lost my optimism) We will await details from GOSH in regard to his gastrostomy.

 

8/02/2010

Hugo’s hearing teacher came this morning. He is very happy with Hugo again. He feels that he is again making a bit more progress with this hearing, he feels that he is more aware of what is going on around him. This is something we have already noticed. We have today started to try and change Hugo’s feed again. We are doing half new feed and half old feed to start with and see how he gets on. He is still coughing and sounds a little croaky again.

We have received an appointment for Hugo to go up to GOSH and see the Neuro-disability team. They will be looking at Hugo’s dysphagia, his swallowing problem. We have been trying him with oral feeding, but unfortunately Hugo is not taking any food at the moment. He seems quite reluctant to feed and now shakes his head for no. The appointment is to see how Hugo reacts to feeding and also to test how his mouth, tongue and swallow reflex is working when he has food/fluid in his mouth. Unlike the video fluoroscopy that we had in October, this is looking at his neurological problems. We are starting to notice where he is affected by his Dandy Walker syndrome, something we had been warned would begin to show after the age of one year. It sometimes feels like there is no end to his problems and although to us Hugo is normal, as he gets bigger although he does move forward well, he also shows the limitations that his body has and will continue to have as he gets older.

 

6-7/02/2010

A very busy weekend, rushed off our feet with John working and me doing all Hugo’s cares, me having no voice, very amusing! I have managed to grab a couple of hours sleep when Hugo had his naps so not quite all bad, but have to say its been hard work and we are both at the most tired we have felt. Hugo is definitely much better and more himself. He is quite perky and starting to babble again so he must be feeling better. However he has now started to cough?? Really hoping this is just a late symptom of what he has had and he is not coming down with something else!! We have a busy week this week with hospital visits and various other appointments.

 

5/02/2010

I am officially exhausted. We have now had 11 days of Hugo being unwell and with his feeds and the extra medication I am running on empty, I have no voice now and feel bloody awful, but John has to work tonight so I am alone here and having to do the late feeds as well as the early start. Hugo is back to four meds now plus the doses of calpol and ibuprofen he is having, I feel like I am constantly pumping medication into the poor little lad. Hugo is brighter today and his stoma site has cleared up a lot more so that is great as obviously his antibiotics are working.

 

4/02/2010

Stoma site a bit better, although Hugo is very tender around his tummy and yelps if you touch him. I am feeling even more rubbish today, my throat hurts and am losing my voice! Today we had a lovely surprise visit from the Photographer who took photos of Hugo while he was in GOSH. He stayed for a couple of hours and took some more pictures, he was really pleased to see Hugo looking so much different to the last time he saw him in CICU!

 

3/02/2010

Hugo vomited his first feed slightly this morning, he is still quite pale and seems a bit under the weather again. His stoma site is very red, oozy and has a yucky green puss – urgh! I had taken a swab of the site and rang his doctor, she is starting antibiotics and also an antibiotic cream for the site. Got to take the swab into our GP’s to get it sent off for testing.

Also discussed Hugo still struggling with his vomiting, for some reason he is not holding his feeds and obviously we are not going forward with his feeding. It still takes an hour for his feed to run and he is still only on 560mls a day. Ideally a child who is gastrostomy fed should be aiming to take gravity feeds by now. This is when the feed is given in a big syringe which you do by hand over a short amount of time. The current option is to restart some of his medication for anti-sickness and possibly reflux. We agree with this. We currently spend five hours a day having to sit with Hugo while he feeds. Obviously we have to monitor that he is not sick, but now he is older we have to make sure he doesn’t pull his feeding tube out, so he is either strapped into his high chair or we have to sit and hold him or keep a close eye on him. Some days this is very exhausting, especially at the moment. We will see how he goes over the next week and what or if it makes a difference.

 

2/02/2010

We have had a good day today, my friend Louise came over for lunch which was lovely and great to catch up with some normal adult conversation. It also breaks up the day for me, as still not going out with Hugo.

Hugo has been a lot brighter, although his stoma site still looks very red, I am thinking that he definitely has an infection again. Poor buggar seems to be picking up infections left right and centre!

 

1/02/2010

Can you believe its February already, the year is already going fast! Hugo is much better today, still a bit spotty but looking much better. However his stoma site is very red and angry now. Had result from some swabs, which were clear, still waiting on the others. If his site has not got any better in the next 48 hours then we may have to start antibiotics again – grr!

 

31/01/2010

Hugo is much more himself today, woke at 5.30am – hard work for me! I’m not feeling well today, got very sore throat and feel pretty lousy. We have reduced his feeds again today to make sure he is tolerating ok. We have also had to go back to his old feed for the time being just so we don’t upset his tummy any more. His temperature has been a bit up and down, he is still having regular calpol.

 

30/01/2010

Hugo woke at 7.30am, he seemed a bit better but when changing his nappy we noticed him covered in spots!!! First thought was chicken pox? Rang the hospital who wanted him in to check over. We arrived at 11am and were put into a side room (in case we are infectious) Hugo was checked over, his temperature was still raised so we were kept in for observation. Saw one of the registrars who felt it was probably a viral rash, but we had to wait and see what the doctor said when she came round and until then they wanted to monitor how he went. He was as good as gold, considering how poorly he felt he laid in the cot and was happy to play with his toys we had bought with us. At about 2pm he fell asleep and had a good hour before waking. He had some more calpol and that helped. Finally at about 4pm the doctor came into see him and also agreed that he had a viral rash and although looked like chicken pox was definitely not. We were offered the chance of Hugo staying in overnight if we needed a rest (very kind) but we decided to go home with him where we felt we would all be much more comfortable. Got home about 5ish and an exhausted Hugo fell asleep at 6.30pm. John had to work tonight, can’t afford any more time off.

 

29/01/2010

Woke at 4am to Hugo’s monitor bleeping and him making strange sort of chugging noises. Quickly got up and checked him, he felt very warm – temp 38.8° c gave calpol and got him out of his cot. He fell back to sleep at about 5.30am in our bed (again very unlike him, he likes his own bed!). He woke at 7.30am and was still not right. I rang the hospital and they said we could take Hugo in. His temperature had reduced which was good but he was very pale. His paediatrician checked him over and did swabs to check for infection. She sent us for an x-ray as he was holding his head back as if struggling for breaths, x-ray was thankfully clear. Decided that he could have a viral infection and after a full check we took him home. Because of being in hospital his feed was running late and his last feed was not until 12.15am, John had not gone to work because of Hugo and so did the last feed. Ten minutes after the feed finished Hugo vomited, he really struggled and we had to suction him quite a lot. He became very distressed and would not settle. He got worse and more distressed and became inconsolable, something we have never seen him do at home, only during his time in GOSH. This had us worried. Hugo did not sleep from then on until 5.30am when he finally fell asleep in our bed. John and I knackered, poor john had no sleep but I managed 4 hours!

 

28/01/2010

Hugo remained unsettled overnight and his heart rate was still high while sleeping. His temperature has reduced this morning which is a good sign. He has struggled to tolerate his feeds today, getting to 100mls and then getting upset so we have been having to stop when he struggles. By the afternoon his temperature had again risen above 38° c he is having regular calpol and ibuprofen. He looks very pale and peaky. I rang the hospital at 3pm to get some advice. At the moment we are to continue monitoring him and as long as his chest is not sounding crackly and he is still quite active and not listless just keep on top of his calpol. He has been quite clingy this afternoon and wanting picking up a lot which is unlike him, so he must be under the weather. Temperature has remained raised but he went off to sleep fine and although became a little sweaty seemed to have no other problems.

 

27/01/2010

Hugo woke at 3.30am, very unsettled and a temp of 38° c I gave him a dose of calpol and he settled back down until 6.30am. When we got up he had no temp and seemed full of beans and ok. Had my friend Carla for a visit today with her daughter Molly. Unfortunately Hugo just wasn’t himself and did not really want to play, however Molly did and had fun regardless of Hugo! His temperature was up again at 38° c but after calpol it came back down. By 6pm it had gone up again, he fell asleep just after 7pm but was breathing quite noisily and his respiratory rate was up. After half an hour or so he settled. His temperature continued to rise between doses of calpol and ibuprofen.

 

26/01/2010

Hugo has been ok today, managing new feed ok. We have noticed he is panting quite a bit and sort of puffing with his breath, hoping nothing brewing?? He became a bit warm after his bath, but seems ok in himself and very happy and full of beans. When I went to bed his heart rate was a little high for him sleeping. He is also panting a bit in his sleep.

 

25/01/2010

Today we have started Hugo’s new feed. He is currently having half the new and half the old so he gets used to it and doesn’t just vomit it. So far he has had no problems. We have again tried some food puree and he seems a bit more interested, although he now shakes his head for “no!”

I had my swine flu vaccine today.

 

22-24/01/2010

Had an easy weekend. John has been working, so I have done both day and night feeds, which is tiring. Hugo has been very active and full of beans. We have not been able to go out for a walk as its been teething it down with rain here! We have tried him with some puree, but he is not interested in it at the moment and really wont take any into his mouth. Trying not to push him and make it not nice but at the same time really want him to understand it. Sadly Hugo has never had food so just doesn’t understand what it is in the same way we do.

 

21/01/2010

Hugo had to have his 12 month immunisations today. He was very good and did not cry just let out a little yelp when they did them. It was very frustrating as we had to wait again and the waiting room was filled with patients (obviously ill as it’s a doctors waiting room) it doesn’t matter how many times we ask if we can go when no one is in, we never seem to be taken seriously. We were able to go into the baby room a bit sooner, but we still worry that he might pick something up.

 

19/01/2010

Had our appointment at Hinchingbrooke this morning. Hugo woke with no signs of last nights problems. We were having an ECHO as Hugo has been a bit unsettled with his breathing and showing signs at times of slight puffiness. Our cardiologist was very happy with Hugo. His ECHO does not really show any changes in his heart, which is a good thing although he still needs to remain on his diuretics. There is still regurgitation and his right side remains slightly enlarged but no worse than his last ECHO. She feels that his puffiness is more related to

‘baby fat’ and not fluid, his weight has not increased much so this is all pointing in the same direction. He laid down as good as gold while she did his ECHO and was quite happy playing with her top and holding her arm with his feet!!

We then saw his paediatrician and dietician. Hugo’s cardiologist has recommended that we try Hugo with some feeding again. There is a worry that he might miss out on trying to feed if we don’t try. Obviously we have to go very carefully, he still has an unsafe swallow and could aspirate into his lungs, but she wants us to try and see if he will take to feeding. This is quite exciting and Hugo can now take small sips from a bottle quite well, but we remain open minded, this doesn’t mean that he WILL be able to eat.

Hugo then had some bloods done to check his levels, these all came back good and at the correct levels. We spoke with the dietician about his food. He is going to remain on the same calories for the time being. He is shorter than average and because of this he doesn’t want to gain too much weight or he will be classed as overweight and then have to lose some, all sounds a bit confusing, but hey ho! He is currently weighing 8.28kg which is 18lb 2oz so he has only gone slightly since his last weigh in December, but they want to just monitor him for the time being.

 

18/01/2010

Physiotherapist appointment at home. Hugo’s therapist is happy with his development and progress. She wants us to try and work a bit more on him standing up against the sofa and trying his cruising movements, (although not as easy as it sounds when he doesn’t want to work on demand!) He can still not sit or stand unaided and is still not crawling. He seems to struggle still with his strength.

His feed had become slightly behind so I decided to up his daytime feeds to 130mls per feed. Hugo tolerated three feeds like this with no problems. He has been a cheeky boy today. Had a good evening and he fell asleep about 8.30pm. John did his 11pm feed, but just after it finished at 12am he vomited. He managed to cope well with it and although he became very upset he did not get too distressed. It took us an hour to calm him down, maybe the increase of feed was not such a good idea!

Lastly our paediatrician has written to the Neurology department at GOSH in regard to Hugo having follow up care with them. Obviously he is still struggling with his physical development and although it is possibly still catch up from his time in hospital, there is also the concern that his Dandy Walker syndrome could be holding him back.

 

12/01/2010

Cancelled meeting with Paediatrician as she now has a bad cold and doesn’t want Hugo to visit just in case.

 

11/01/2010

Hugo’s teacher for the deaf was here this morning, he has re done all of Hugo’s tubing in his hearing aids and they now fit much better. Hugo had a very good reaction to sound once his right aid was fitted in properly. His swabs have come back, with Rhino virus, which to you and me is the common cold!

 

10/01/2010

HUGO’S FIRST BIRTHDAY. We have had a brilliant day, I put up some balloons last night so when we bought him down this morning he had a decorated room with all his presents.

He has been very good and not minded all the fuss at all. He has been interested in the presents and cards when we opened them. He has had some lovely gifts so thanks to those who sent them. I made some cup cakes (even though he can’t eat them!) and we lit candles and sang happy birthday to him, which he loved. It has been such a lovely afternoon. A really wonderful and special day for us.

 

9/01/2010

Hugo is much better today, more settled and more like his normal happy self

 

8/01/2010

A very unsettled night, heart rate was raised, very uncomfortable and croaky. Temp still high and needing to suction regularly because of snotty nose and secretions. Dosing still with calpol and ibuprofen. Bacterial swab results clear so that’s good news, late pm started to perk up a little.

 

7/01/2010

3am Hugo had a temperature of 39° c was struggling to breath and was very unsettled. John and I decided he needed to go to hospital and quickly set about packing everything. We left the villa at 5.45am and arrived home at 7am, just as it started to snow everywhere (except Peterborough!) on arrival Hugo was again running a temp and just not well. We rang Hinchingbrooke and spoke to Hugo ’s doctor, she wanted him to come in to be checked over.

We arrived at 11am. Hugo was sent for a chest x-ray which was fairly clear. She took swabs of his nose, throat and mouth. She has started antibiotics. Hugo’s temperature continued to rise even with calpol. He remained unsettled, with a running nose and very croaky. He did have a room ready on the ward to be admitted but Hugo’s doctor felt he was well enough to go home and for us to monitor him overnight.

2009 has been a really tough one and John and I still at times find it hard to believe how Hugo started his life and how much he has gone through to get to now. We have learned a lot and have so many people to be thankful to. Not a day goes by when we don’t think about all the other little boys and girls we have met during our journey this year. Sadly some of them are no longer with us and its at Christmas that we are thinking of their families. Some days when we are struggling with Hugo I wonder why he has to go through so much and wish things could be different, but they are not and so we must just carry on. You only get one go at this life and even if its not what you had planned, you have to grab it with both hands and hold on to it, because some of us don’t have that chance and when I am holding Hugo this Christmas I will be thinking of them all.

 

19/11/2009

Hugo has been awake since 4.30am! Very full of energy today and showing off lots. We had to turn his g-tube today which was the first time since his infection, it was a bit tough but went in the end and it is not oozing or bleeding which is good. We had a lovely walk this afternoon and then Hugo fell asleep and wouldn’t wake back up (it was only 4pm) so I spent 20 minutes trying to wake him and finally at about 5.20pm I got him to wake up!! Little monkey!

We have been so busy with hospital appointments in the last few weeks and in the last two weeks been up at Hospital for at least two visit’s a week!! Hugo finally had his right hearing aid fitted on 1st Dec, although it doesn’t fit very well and we had a new mould done yesterday (15th) so hopefully that might work better.

Hugo in himself has been very good, he is babbling all the time now and can now say dada, nana, ga and mmmmm. He is always babbling with some sort of sound and very noisy! (remind you of anyone?) he is also trying to crawl and really loving being all fours trying to go. He can go backwards, and finds himself very frustrated that it’s the wrong way, he is very funny to watch. He seems to have boundless energy at the moment and only stops when he is out of power!

We have had another bad bout of Hugo vomiting his first feed of the day, this went on for about 5 mornings in a row and was very difficult to manage, however we have now tried a few new ideas and are now having to sit him in his highchair while feeding his first feed and we have also started to mix a more thin feed in with his usual Infitrini. So far this seems to have worked. We finally got an appointment with a dietician yesterday and she is a little concerned that Hugo is still not tolerating feeds well and not managing a big volume. He is now going to need to move onto a different feed for older children. It will be a much higher calorie food than what he has now so he can have less volume but still get what he needs to grow. It also has added fibre to try and help his bowel problems. His weight yesterday was 8.12kg which is 17lb 14oz so he has only gained 1lb in the last month and can’t afford to lose any weight.

Lastly Hugo has had another bad infection in his stoma (gastrostomy) site. We ended up in Hospital on Saturday night as they wanted to check him out with the idea that he may have to be kept in and given IV antibiotics, thankfully they let us go! However we got the swab results back yesterday and it is apparently Ecoli! So we have had to change all his antibiotics and are now wondering where on earth that has come from and thankful that he has not been more poorly with it. Hopefully he is now over the worst.

 

18/11/2009

Hugo was up at about 6am so not a bad nights sleep for him and us. We had our visual impairment teacher here today with our worker from Portage. VI teacher was doing lots of play with lights and flashing toys today. Hugo was on top form and really concentrating on what she was doing with him. She had him sitting up while she worked with him and he sat for about 15-20 minutes with very little support from me. He was doing so well and getting very excited by certain lights. He also seemed to love some of the shiny rustling toys she had. We have been lent some new light balls and a fibre optic light, which Hugo loved. Later in the day I also managed to buy a small fibre optic light which he also loves, we just have to watch him as he keeps poking his right eye and because it doesn’t shut we will have to be careful or he could really scratch the eye. Its so rewarding seeing him making such good progress with his vision and we remain hopeful that his right eye has improved.

 

17/11/2009

Had a lovely visit today from Matt, Keeley and Betty. Its been a great day of playing, talking and having a lovely walk with them all. Betty looks fantastic and is growing so much and getting very long! Hugo was quite impressed by his visitors.

 

16/11/2009

Had Hugo’s teacher of the deaf here this morning, he is very impressed with Hugo and how he is doing, the sounds he is making and how he is responding to us and obviously him. He has checked Hugo’s hearing aid and is happy with it.

Hugo had appointment at the hospital at 2pm, we have managed to get on top of the infection but he has been prescribed some antibiotic cream for his bottom which is now very sore and blistered. His weight has gone up and he is now 8kg!!!

Hugo had his swine flu vaccination at 5.30pm, was a bit of a mad as the surgery was packed with people, most of who were adults and a large amount were coughing – Grrr, we spend most of our time not taking Hugo into environments like this and found it very stressful. Hugo had was asleep and hardly stirred when they gave him the jab, he has to have 2nd dose in three weeks. He had no adverse reactions and only a red mark where the needle went in.

 

13-15/11/2009

Hugo still suffering from his antibiotics, bum terrible but his stoma site is looking loads better – phew, think we may have got away with it this time!!. Had a letter Saturday morning – Hugo has his swine flu vaccine Monday evening!! Thank goodness for that. We have left his nappy off for most of the W/E which seems to help a little. Hugo is still taking small drinks of water from the bottle and doing very well with it, he now wants to hold the bottle on his own, so seem to be making a bit of progress.

 

12/11/2009

Poor Hugo, antibiotics have kicked in with vengeance and he has a dreadfully sore bum!! Hugo’s Doctor phoned with Hugo’s swab results, he has a skin infection although it is not MRSA (didn’t realise they thought it was!!) so she is very glad that she gave him the dose of antibiotics.

 

11/11/2009

Hugo had his 2nd flu jab today, all went ok. Had hoped that he would get his swine flu jab today but they are still not in. when I asked about it the nurse told me that when its in Hugo will get one but she doesn’t know when it is. I explained that I am worrying about Hugo not getting it and she told me that I was getting in a tizzy and I should calm down! Left very cross and upset, I sometimes wonder if people really understand the worry we go through with Hugo. He was quite grizzly later in the day and I gave him a dose of calpol which seemed to do the trick.

 

10/11/2009

Hugo’s antibiotics have kicked in and he now has a very upset tummy, stoma site still not looking great.

 

9/11/2009

Rang the children’s ward and asked them if we could bring Hugo in this morning to have his stoma site looked at. I am concerned that the hole has become slightly bigger, his doctor agrees that it looks slightly bigger and is worried that if it does not get any better we may have to take Hugo up to GOSH to have a new gastrostomy tube fitted. She gave Hugo antibiotics, I was worried she had given him too high a dose but she has done that on purpose as she feels a more aggressive approach may help to heal the site better and quicker. The last thing we need is having to have it changed as it would involve a general anaesthetic and Hugo really needs to hold out on having one. Hugo was also weighed and he has only gained 70g in two weeks which she is worried is not enough. He is not on a big enough volume of feed for his size and weight, but obviously because of his problems with tolerating the feed we cant just increase his feed volume. We are still waiting for the dietician to contact us.

 

7-8/11/2009

Easy weekend, just pottering about, took Hugo out for a walk round the village and generally doing normal boring stuff!! His stoma site is looking a lot more red and is now oozing and crusty, not very happy with it and quite sure its got some sort of infection. He is fine in himself though and doesn’t seem to be suffering any other side effects. We have decided that we will take Hugo into the hospital when I am in for my appointment tomorrow.

 

6/11/2009

Had SALT round this morning to tell us that Hugo must not have food orally, she said that we could continue to give him very tiny amounts of tastes but a very small amount, which we know anyway. He can’t have another video fluoroscopy now for another year so we have to just keep him as he is until next year. Our community nurse was here also and I got her to check Hugo’s G-site. She felt it was ok just a bit red and said to keep an eye on it.

Homeward nurse came by this afternoon to see us about the extra medical supplies. She has also checked Hugo’s tube.

When we were last up at GOSH we saw the stoma nurse who told us to stop pushing in Hugo’s tube when we turn it each week. So we have been doing this. However the nurse told us that we must always push it in and so suggested that she do it for us, it was stuck a bit and we had to use some Vaseline but it did turn fine. About half an hour after she left we noticed it bleeding and looking very angry so rang the community nurse and they said someone would pop out. She came about an hour later, had a look felt it was ok and no need to swab it and to keep an eye on it over W/E.

 

5/11/2009

Another day of trying to prove Hugo’s medical needs, we need some new ends for his gastrostomy tube (the part you have to screw his syringe into) and our dietician won’t allow us to have them, she is sending round a nurse tomorrow to assess his needs. We have asked to purchase them ourselves but still not allowed them? Stupid! Have noticed his G-tube site is looking quite red and angry today.

 

4/11/2009

Hugo on great form, very happy and excited, especially when my niece Caitlin came in for a play earlier. Bit unsettled late afternoon and I gave him some calpol, but seemed ok afterwards.

 

3/11/2009

Fantastic day,  we went to the coast for a long awaited day out – it rained all day!!!! However had a great time, apart from John knocking my latte all over me! Ended up with a lovely long walk along Hunstanton sea front just as the sun was starting to set. Hugo was brilliant and seemed to enjoy the brisk sea air almost as much as John and I.

 

2/11/2009

Trying to get Hugo to sleep better at night so have had him in his bouncer for longer periods today, remains to be seen if it works!

 

31/10/2009-01/11/2009

Easy weekend, John at work so just me and Hugo for most of it. Hugo has been taking small amounts of water by the bottle. He has spent quite some time in his playpen. His feed reduction has made a big difference and he is coping really well with no reflux or vomiting.

 

28/10/2009

New monitor did not work so John was awake half the night! (very grumpy John today!). Got new one late afternoon the same as the last so all sorted.

 

27/10/2009

Hugo has had a good 24 hours with no problems. Were at the hospital at 11.30am. His chest is clear although his upper airway is congested (we have been having to suction him more so had already felt this) His paediatrician also checked his testes and can only feel one higher up in his abdomen. She is referring him for an ultrasound. Basically the worry is that if his testes are staying high in the abdomen there is a worry they can become too hot and this can cause problems with fertility, although we don’t expect Hugo to be able to have children of his own, it needs to be sorted out and cant be left. Another problem arises!!! Will it ever end???

We were also asked how we are coping with things. His doctor knows that we have a lot to deal with in Hugo’s day to day care and is worried that we aren’t getting enough support. She has also discussed Hugo’s health as it stands at the moment. He must have the swine flu vaccination as soon as it is available. Hugo is acutely unwell and she wants to make sure he remains well through the winter. She feels that we are doing the right thing by not exposing him to playgroups and crowded areas for the time being. It is good to hear that we are not being paranoid in our worries for Hugo. If Hugo becomes ill she will not hesitate to admit him or prescribe antibiotics. Our community nurse came for a catch up meeting this afternoon. She also bought us a replacement monitor as the one we have needs to be pap tested. New one is not as good!

 

26/10/2009

I rang the hospital first thing, Hugo‘s Doctor feels that Hugo is not tolerating his feed volume and suggests reducing the feed to 120mls per feed. We are going to give him first and last feed at 100mls and three daytime feeds at 120mls for the next week or so and see how he does. If he continues to keep vomiting then he may need to restart his reflux and anti sickness medication. She is going to check him over tomorrow and listen to his chest to make sure he has not aspirated. He is now not having his swine flu vaccination. The hospital are not allowed to give it to him, so he has to wait until our GP’s have them in.

It is very worrying when Hugo is unwell and today has been a very hard day. The health visitor came to see Hugo for his 8 month check, when she was checking him she noticed that his testes had not yet dropped and she could not feel them higher up so she suggested mentioning it tomorrow when we go to clinic.

 

25/10/2009

Hugo had a good day, had a bath about 5pm and he loved it as usual. He had his feed at 6pm and had just fallen asleep as I was putting it on. The feed finished at 7pm and he was fine, then at about 7.15pm he went funny and rigid and let out an odd groan, I was upstairs and John called me down (was just getting in the bath!) as I got down and picked him up he seemed to be swallowing/refluxing. He then vomited all over me, we had to suction him but he just kept being sick (problem with suctioning is that when you do it, it makes him more sick, but he can’t clear his airway so we have to keep doing it or he would choke )

Things got very stressful, he had started to recess and had gone very grey and mottled. We put him on the monitor and his sats and heart rate were both good. After about an hour he fell into a very restless sleep. We had stripped him and so got him into some clean clothes and we just sat with him keeping an eye on him. His last feed we reduced down to 80mls and he had this about 10.30pm. He had no problems with this feed.

 

24/10/2009

Had a nice day, Dad came round with Nanny, was great to see her and she was full on with Hugo, fussing as best as she could over him. She just kept saying ‘oh he’s lovely’ bless her. I did us some lunch and we had a lovely couple of hours. Hugo has been sitting quite well today and when he is on my lap is now really trying to sit forward. He now loves sitting on my lap watching strictly come dancing. I think he loves the lights and sparkles and music, he now gets very excited when the music starts!

 

23/10/2009

Hugo woke quite lively this morning and ended up vomiting a small amount of his feed. He has had a lot of secretions today and required a lot of suctioning. Feeling quite run down today.

 

22/10/2009

Hugo has been very full of beans today, went out for a drive in Johns van which Hugo loves as his car seat is next to the window and he can see out and watches everything.  We are hoping to hear from the dietician as still not had any response and Hugo’s feeds are now back to being run over an hour. His volume is 120mls per feed.

 

21/10/2009

Hugo’s visual impairment teacher came in this morning, she is trying to get Hugo some toys and lights to have at home, so look forward to getting them. Had a phone call to say that Hugo should be having his swine flu vaccine next week.

 

20/10/2009

Its been a busy day, started with a family visual clinic meeting at 10.30am. This was a meeting with a paediatrician, ophthalmologist and our visual impairment teacher. Meeting went well and Hugo showed off very well. Think they were all impressed with his performance, makes us very proud!

Then had clinic for an ECHO. Discussed how Hugo is doing and she was asking us about Hugo’s time in GOSH. His ECHO looked ok, there is no improvement, but it is no worse. He needs to stay on the diuretics. We discussed his long term plans and future surgery’s and there was talk about Hugo needing to possibly go onto some more long term controlling drugs, but we will wait until the new year before going any further forward with that.

 

17/10/2009

Had a much better day. You wouldn’t think that we had any problems yesterday! Hugo has been very playful and happy today. Much more himself. I have kept his fluid down today and have reduced his feeds to make sure that he doesn’t vomit again

 

16/10/2009

Hugo was awake at 5.50am. John and I felt that he was looking puffy today and his fontanel has been bulging, we spoke to Hugo’s paediatrician and she said to see how he goes, although she has increased his diuretics slightly to match his weight. If we are really worried we can take him into clinic on Tuesday for an ECHO. Had the community nurse out today as his G-tube is weeping and has a smelly discharge. She felt it was ok. Hugo’s feeds have slowly increased over the last few days and he is now on 140mls per feed. John was working tonight.

I put Hugo to bed and he was fine, but just as his last feed finished he vomited. I really struggled to clear his airway on my own and after about 20 minutes of struggling Hugo had gone very pale and was mottled. I got to the point that I couldn’t manage on my own so I rang John who said he would come straight home and I rang my mum, she was able to get to me a lot quicker than John. It was very worrying being on my own when this happened. Eventually thankfully Hugo relaxed and settled and we took him downstairs to keep an eye on him. He finally fell asleep about 1.30am.

 

15/10/2009

Hugo was unsettled overnight with a high temperature and his heart rate was quite high for him. I gave him some paracetamol at 2am and he kept stirring until he woke properly at 5am. His Doctor rang with Hugo’s Parathyroid hormone results. He is on the lower side of normal so we are stopping his medication for the time being to see how he gets on and we will do another blood test in four weeks.

 

14/10/2009

Had early learning teacher and Portage worker in this morning. They come in to oversee how Hugo is getting on and make sure he is getting the help that he should be and is catching up to the stages he should be reaching. They are very pleased with him. He is making tremendous progress and they are really happy with him. I have finally been told of a weekly meeting group for children with special needs. It is in the next village so we will maybe give it a go in a few weeks when Hugo has his swine flu vaccine.

Had our winter flu jabs today. Hugo been very grizzly latter afternoon but still full of his normal beans and after a dose of paractemol, he was back to his normal self. See how he goes overnight.

 

13/10/2009

Another long day of hospital appointments. Hugo had an audiology appt at 10.45am and had a fitting for his right hearing aid. Very good mould from his ear so should have a new one within about a week.

Then had an hour and a half break. Thanks to Nana and Granddad for giving us a very quick lunch. Then into children’s unit for bloods. He was very brave and hardly cried bless him. Then at 2.50pm had video fluoroscopy. This time Hugo was on ok form and did not fall asleep. Although he was more interested in watching all the ladies who were present during the test. We had to try him with a bottle first and then some food. Unfortunately Hugo is aspirating into his lungs. This means that when he swallows some of his food/water is going into his lungs, this is a very big source of chest infections and could lead to pneumonia. We are now allowed to continue with his tasting, but only very small amounts, never any more than one teaspoon during one time. He can only have small sips of water from a bottle and only on its own, he must not have any water at the same time as food or it could easily go into the lungs.

This is a real disappointment to us. Hugo has shown great signs of wanting to eat/drink and we had really hoped that we might be able to move forward with this one. However his lungs are clear so he is ok and we must make sure they stay like that. As it is also coming into winter we have to be even more cautious and not push him too far (we don’t anyway).

It is a big reminder that Hugo is not in any way becoming ‘normal’ he is likely to have his feeding tube for some years from now, possibly until the age of 8. There is still a chance that because of his bulbar palsy he may always need the tube. Sometimes even we get carried away, we have cherished seeing him take a bottle for the first time, you really take for granted how babies just take a bottle when they are born. Seeing Hugo do something so normal was very boosting and I suppose that I have hit the ground with a thud yesterday.

Anyway, his electrolytes are all good, we are just waiting to see if the results of his parathyroid bloods.

 

12/10/2009

Saw Hugo’s teacher of the deaf. He is happy with Hugo’s progress and feels that he is responding really well with his hearing aid. We have discussed Hugo now having his right ear fitted with an aid and we are going to get this done tomorrow.

 

10-11/10/2009

Had a good weekend. Nice and relaxed, spent Saturday taking it easy with Hugo, had a lovely long walk in the afternoon. Sunday had a lovely afternoon at Dad and Karen’s. Sue and Phil were visiting and we had a lovely afternoon with them, Hugo had lots of cuddles and attention and completely showed off to them all.

 

9/10/2009

Very glad to have slept in our own bed! Have had a date for next Tuesday to have Hugo’s next video fluoroscopy. Hugo became quite unsettled late afternoon so gave him some paractemol and had a long cuddle. Think that this week has really unsettled him being out of routine.

 

5-8/10/2009

John and I were away for a few days this week. On Tuesday night Hugo had a very bad vomit, had us both very worried as he would not stop for about an hour and we really didn’t know what had caused it, it was not feed related and he was asleep when he started. He didn’t settle until 1am and we finally got to sleep about 1.45am. Hugo woke completely fine and full of beans at 5.30am – very glad he was ok

 

4/10/2009

My 30th birthday!! Had a lovely day, very spoilt by my husband and Hugo, they got me a new camera and a DVD and some lovely cards. Thanks to everyone for my cards, and a very big thank you to those of you who sent a donation on my behalf to GOSH. I really appreciate it thank you. Managed to bring Hugo’s feed down to 40 minutes today – very exciting.

 

3/10/2009

Nice easy day chilling with my boy, John working last night so in bed all day. Hugo has been very active, in his bouncer, trying to stand (with my help) and very much moving himself around the lounge

 

2/10/2009

Today we have managed to bring Hugo’s feed rate down to about 45 minutes – big progress. He is really rolling and moving himself around so when feeding we now cant leave him at all or he will either knock his feed over or if he pulled hard enough, then he could pull out his tube. John found him halfway across the room with his tube stretched to its limit!! We can now work at bringing it down some more.

 

1/10/2009

Can’t believe its October already! Had a good day today, taking taste’s well and very happy boy. Has been in his baby bouncer for ages today and then getting very cross when taken out!

 

30/09/2009

Hugo has been a bit grizzly today, has a lot of secretions and is very rattly in his chest. Have been dosing him with paracetamol. Tried doing some tasting today but he is not interested. Spoke to his paediatrician, she is happy for us to do the next one at Hinchingbrooke with her present. Decided to stop one of his medications next week and do bloods next Tuesday. There is a noticeable difference where we have increased his diuretics, which is good.

 

29/09/2009

Left home at 8am in order to reach GOSH for appt at 11.40am. Had to stop after 25mins as Hugo had dirty nappy, then another stop at south mimms as needed a quick break (me and John). Set up a feed on route, but had to run it a lot slower than normal in case he vomits on the journey. Got to GOSH by 11.15am so quickly got everything out and got Hugo into x-ray. They were running 20 minutes late and it was very hot and stuffy in the waiting area. Hugo was in good mood though and was watching the children’s play lights. Got in for appt and Hugo started to show signs of falling asleep. The x-ray room was very hot and stuffy and I could see Hugo’s eyes starting to shut. He got a bit unsettled and we tried a couple of spoonfuls of food – although there was so much barium into it that it was just white goo. They have to use barium to trace it on the x-ray. Hugo had a slightly wet nappy so we got him out to change him and the poor love fell asleep as soon as he got into my arms. We changed him and tried to put him back in the chair and wake him. We explained that once he was asleep then you generally wouldn’t wake him.

We had to leave the room very quickly and were not allowed to come back later.

When we got out we were asked if he was hungry, had we made sure he had not been fed. I explained that Hugo has nothing orally and so does not associate food with hunger and if he is not interested in eating then you can’t make him do it. We did explain that we had driven for over 3 hours to get there and that it is a very long journey for Hugo.

So got Hugo back in the car and set off for home. Thankfully on the way home we diverted into see Matt, Keeley and Betty for a very needed cup of tea. Hugo had a small vomit, on their carpet! Sorry guys! And seemed to react a bit to the barium. But had a little sleep and seemed ok once he woke. We got home by 6pm so not a bad journey home.

 

28/09/2009

Easy day as long day at GOSH tomorrow, Hugo very full of beans and babbling lots. Diuretics have been increased. His weight has gone up, this is probable reason for sweaty episodes.

 

26-27/09/2009

Good weekend, Hugo been on good form, babbling, rolling, full of beans and just very excitable. Has been taking food tastes again and coping well with them, tried to grab some toast off me this morning and so I let him have a bit to suck on. However he very quickly chewed a piece and it got stuck at the back of his mouth and he started to gag, luckily I had suction to hand and managed to get it out – but not a good idea!!

 

25/09/2009

Spoke to hospital about Hugo today, he is still sweating and has loose stools. They are not too worried if we are comfortable with him.

 

24/09/2009

Still having sweats, I’m feeling unwell today and think Hugo may also have something brewing.

 

23/09/2009

Hugo very unsettled today, very grizzly, think he is probably tired. No temperature and tolerating feed so not too worried and given paracetamol. Has been having slightly more sweaty episodes again, will see how he goes.

 

22/09/2009

Very long day at GOSH, Hugo awake at 5.30am, left for GOSH at 10am. Had to stop twice on route for Hugo to have nappy changes and to sort out his feed. Its really hard driving with it running. He is not really supposed to have it on the go while driving in case of vomit problems, but can you imagine if we were to not feed him while going on journeys!! Got to GOSH at 12.30pm so good journey in. First stop was the gastro nurse to check his g-tube. All is ok with it and she is happy that there are no problems with it keep getting stuck. Next appt was SALT, talked about how Hugo has been having tasting’s of food and she has offered us a place next tues for video swallow test!

Next appt was Ophthalmology – bit confusing – again, saw a consultant who tells us that Hugo has full vision in his right eye. We know this is untrue. He has a Coloboma in the right eye which  impairs his vision. And we have seen many consultants who have all said that although Hugo does have vision, we cannot tell how much at such a young age, but it is definitely not perfect. He then started telling us that he feels Hugo would benefit from a cosmetic procedure to put in a false left eye to make it look the same size as the right eye. We are not too happy with this idea, Hugo would need to have a general anaesthetic to make the mould and would need lots of appointments for fitting etcs, and personally we can’t see what he is going to gain from it apart from making his eyes look more similar in size. We also feel that he is too young and has more important health issues to be concentrating on, and there is always the possibility of him having some sight in his left eye and we would not want to remove it.

Next appt was Genetics just to go over Hugo’s CHARGE diagnosis and discuss what tests are available to us if we choose to have another baby. Current options are a 11 week Chorionic villus sampling (CVS) test. This is a diagnostic test, which means that it can tell you with almost complete certainty whether or not your baby has got a particular condition. Our other options are amniocentesis at 15 weeks and detailed ultrasound scans. As it stands we have a 1 in 100 chance of having another child with CHARGE so it is not particularly high. It is just going to be something we will have to think about when the time comes for baby no two!!

So left GOSH  at about 6pm, just in time to hit London traffic – great! Finally got home at about 8.45pm. Thankfully Hugo had fallen asleep on the way home so we just got him changed and straight into bed, neither of us had eaten so we had some toast and went straight to bed.

 

17/09/2009

Hugo is intent on trying to crawl today, he is now onto his knees and rocking slightly on his elbows, has been at it all morning – cheeky monkey!

 

16/09/2009

Hugo is much more improved than previous days and has been really full of beans today. We have managed to increase his feeds again and he is back up to 115mls, not quite as much as before but a good start.

Community nurse came at about 11am, managed to turn and move the G tube, needed a bit of force and some Vaseline. Not sure why it stuck, but its sorted now – phew.

Finally got hold of the Speech and language therapist. She is now coming a week Friday. GOSH won’t see him for a video fluoroscopy until he is showing that he can be tempted by food.

I have been giving him small tastes of food, literally just a tiny touch on a spoon and he is taking it ok and not gagging (but it is a touch) he seems very interested in the food and really enjoys putting the spoon in his mouth, so who knows, see what she thinks on Friday.

 

15/09/2009

Hugo much better today, woke well and a bit more perkier than yesterday. Much happier, so obviously feeling better. Had one dose of paracetamol but all in all much better.

We have to turn his Gastrostomy tube once a week and push it back into his tummy to make sure it has not stuck into position. However when trying to do this this afternoon it was stuck solid and would not budge, had to call hospital and then community nurse who is coming in the morning to see what’s

 

14/09/2009

Hugo slept until 6.50am. I put his feed straight on. He got to around 89mls and again became very distressed and unsettled, went very pale and sweaty. So stopped feed. He then fell asleep exhausted so let him rest. Decided to give him a dose of paracetamol.

Rang the Doctor at 9am and spoke with her. She recommends putting him to 2 hourly feeds for the day and dropping volume and see how he goes. Still terrible diarrhoea, she thinks he may have had an infection that is now clearing up?? Both sample results were negative.

Very long day, two hourly feeds is hard work with a feed pump. He has 65mls given over about 40 mins. Takes 5-10 mins to get feed pump set up, then feed him, then have to disconnect it and flush it off. So gave a feed at 11am, it finishes at 11.40am, then next feed due at 1pm. And so on, knackered by the end of the day. Last few feeds he tolerated well so decided to give him his 10pm feed as a full feed of 100mls. didn’t fancy feeding him every two hours overnight – thankfully he tolerated it well and slept through fine.

 

13/09/2009

Hugo has been quite unsettled today. Took him out  to the Landrover show (John was going and I needed to get out of the house so agreed to go, was bored after 10 mins but humoured my husband anyway) Hugo was not quite right when walking round and had a very long sleep which is unlike him during the day and in his buggy. Got home and he settled but was quite pale.

Had Dad and Karen over for dinner, they arrived as I was bathing Hugo and he was seeming a bit brighter but just as I served up dinner he became inconsolable, very unlike him and the worst we have ever seen him, bit worried as he was drawing his legs up and seemed in a lot of discomfort. He was part way through a feed so we stopped it. He then dropped off to sleep and settled. We decided to bring his volume down slightly during the next feed and see how he went. Tolerated the next feed fine, but was asleep.

 

12/09/2009

Really nice weather day today, but John has shut the car in the garage and I can’t get buggy out to take Hugo for a walk…Grrr. Not amused, wanted to have a nice relaxing walk in the sunshine. Another easy day of not doing much. Hugo still got bad tummy, wondering when it might stop, as poor love is none stop pooing!

 

11/09/2009

Easy day, after a busy one yesterday, just took Hugo out for a walk in his buggy and taking it easy.

 

10/09/2009

Really busy day, left for hosp at 1pm, got into children’s clinic, which was busy so had to leave for Ophthalmology appointment. this took forever (always running late!) had first appt where they checked his responses. He is showing improvement in the right eye, but not much response from the left eye. She put a patch over each eye to see his reaction. When it went over the left eye Hugo didn’t even flinch however when she put it over the right eye he got really distressed and started to cry, obviously it had completely blocked the vision. Then had to have drops to dilate the pupil and we then had to wait about 40 mins to see the consultant.

I then went to set up his feed – and realised that I had bought everything except feeding containers – oh dear! I rang through to children’s ward and luckily they had a spare one so then had to run from other building back to main building up to children’s ward and back again to set his feed up. Luckily Hugo had fallen asleep, but had got very upset before falling asleep. Very lucky we were at hospital or I would have had to drive home to get him one.  Poor lad, his feed ended up an hour late.

We finally got back into see Hugo’s consultant who was pleased with Hugo’s progress. As he is bigger now we can see what responses he is making much more easily. It is obvious now that he has poor if any vision in left eye. She feels that he will possibly know the difference between dark and light but that is possibly it. She is hopeful that his right eye has moderate vision and hopes that that will continue. She is pleased with how he is responding though. Started to gag as we left, think had too much handling while feed running.

Left ophthalmology, back over to children’s unit. While waiting Hugo had a small vomit – argh! Managed to sort him out quite quickly but panicked the receptionist with our fussing and suctioning. Got straight in thankfully. Gave her Hugo’s poo samples (nice) she is sending two, one for a bacterial virus and one for viral. She had a good check over and is happy with him, felt his tummy which is fine and liver which is not enlarged. Listened to his chest which was clear, so not sure what is causing it.

Finally left hospital at 5.40pm so didn’t get home till just after 6pm, very long day, both knackered, Hugo went to sleep with no problems, he was full of beans all the way home, not sure how he does it.

 

9/09/2009

Bought Hugo a baby bouncer yesterday and he is loving it.(thank you Terry and Alison who are paying for it) Gets very animated especially when we have music on too. Hugo has improved slightly on feeds and we have increased the volume very slightly which he is tolerating, however he still has very upset tummy and today he was passing blood. I rang the hospital and spoke to his Doctor she feels that if he is well and not showing any pain then don’t need to bring him down, but we are at hospital tomorrow for ophthalmology appointment so are taking him in for check up then.

 

8/09/2009

Hugo still got bad tummy. Another busy morning. Visual impairment teacher has been to see him. Bought lots of learning toys, although Hugo has most of what she bought! Then got out some different coloured lights and torches and waved them around. He was mesmerised by them. His teacher was very impressed by this and feels that he is really making good responses. Midwife rang, can I tell them how many blood transfusions Hugo has had for the blood test???? No idea off top of my head, lots, then she said she just needs date of last one – lucky I write all of this down in my diary.

 

7/09/2009

Busy day, physiotherapist came am, very pleased with Hugo, really pleased with his motor development and feels he is catching up to his age group. Feels his head control has improved and is really pleased that he is trying to stand with some help. Still not able to sit unaided but he is trying very hard.

Pm saw teacher of the deaf. He will be seeing Hugo on a regular basis to assess his needs and requirements. Again he is pleased with how is doing, finds it amusing that he is so loud, but apparently this is not unusual for children who are hearing impaired.

Then just as we thought we had already had a busy enough day, my midwife rang Apparently can’t find a record of Hugo having a newborn screening blood test?? I know he had one as had seen it in his notes at GOSH. But no record anywhere so can they do another, so over she comes and does a heel prick to get blood. Hugo actually laughed when she pricked his heel!! He was so busy smiling and laughing at her I think that he had no idea what she was doing – little flirt!

 

6/09/2009

Easy, relaxed day today, just what you need on a Sunday, especially after John having such a busy hard W/E. Hugo has had a really upset tummy for a few days now, not sure why, his tummy has not been settled for a few weeks, but just got a bit worse? Had to use suction today – but not bad going to have 3 days of no use.

 

5/09/2009

Hugo is very loud today, babbling lots and really full of beans. He has really had me laughing today, spent most of the afternoon taking photos. Terry and Alison bought Nan over and she had her first hold of him – very lovely moment.

 

4/09/2009

Booked our holiday today – very excited. 2nd day in a row that Hugo not required any suctioning, quite good progress.

 

21/08/2009

Hugo been off colour today, very grizzly and just not himself, given him paracetamol and just lots of cuddles. Very funny tonight, John decided (typical man) to put on his balaclava and see what Hugo would make of him ( I obviously thought it was a bad idea, scaring the little man etc…) anyway to my horror, Hugo thought it was the funniest thing????? He was giggling away, I have born a child with John’s sense of humour, OH MY GOODNESS, any suggestions!!!!

Its been a hard couple of weeks and both John and I are knackered. I am finding some days really tiring, with all of his meds, feeds, suctioning. Because Hugo wakes at 5am most mornings for his first feed I’m awake from then on, I’m not getting any catch up sleep during the day ( what mum does, she is a liar if she tells you otherwise!!!) so I’m starting to wilt a bit.

Still the boy is amazing, keeping us going and completely blowing us away with his determination.

After a couple of very worrying weeks we saw one of the cardiologists from Great Ormond Street at local. He is pleased with Hugo and how he is doing. Apparently his heart is working as it should be and there is a very tiny slight increase in his regurgitation but that is to be expected. Everything is working as it should and he is very happy with Hugo’s progress.

This is such good news for us and a great relief after a very worrying and stressful couple of weeks.

Obviously we were worried as he is showing symptoms of something? One thing it could be is slight aspirations into his lungs.

Basically because he cannot swallow properly and has the bulbar palsy he could be having small aspirations of saliva into his lungs. This is why the diuretics could have helped – by drying out excess fluid from his lungs.  At the moment Hugo is not showing any signs of becoming ill from aspirating, but we have been told now that under no circumstances must he be given anything orally (which we don’t do anyway) we just have to keep an eye on him that he does not come down with any chest infections as the summer turns into autumn and keep a close check on him.

This week has been one of our best. On Friday Di and Anne came to visit with Michael. He has not met Hugo yet and was so good with him, Hugo loved him. On Sunday we spent the day at my Dad’s with some of the family and it was so nice, my niece and nephew were there too and loved being with Hugo and really fussed over him. Bank holiday Monday we had a visit from Matt, Keeley and Betty who we meet while in GOSH. Their daughter Betty was in having heart surgery 4 weeks after we arrived. She has made a fantastic recovery and is doing so very well. She is an amazing, beautiful little girl and Hugo was very taken by her (as were we!!) It was wonderful to see them all and Hugo really benefited from spending time with a child of his own age – something he has not yet done. Tuesday my friend Carla came over with Molly who is 11 months, again Hugo was highly impressed by his lady friend and we now think that Hugo really is the little flirt that we thought of him!!

It has been so nice to have a week of normality – makes a very pleasant change. Hugo is full of beans at the moment and becoming very loud, he is babbling lots and really making good sounds. He now says Da Da very clearly and uses it well (very unfair John gets first word) He is also desperate to stand so we are buying a baby bouncer this week. He really is a little star.

 

20/08/2009

Good day, Hugo very settled, we all went out with John to get his stock for W/E……..in the van!! Very interesting and fun, Hugo thought it was great as he could see out of the window.

 

19/08/2009

ECG tape removed and taken back. Very energetic think the extra dose of diuretics working well. Still sweating but not as profusely as before.

 

18/08/2009

24hr ECG Tape fitted, took Hugo into children’s unit for check up. Had blood taken to check Hugo’s electrolytes and parathyroid hormone, also took stool samples as still got very upset tummy. All bloods came back good, except parathyroid hormone could not get a result. Tested negative for both viral and bacterial infection which is good. Had another vomit tonight, got very upset and needed a bit of suctioning and then fell asleep very quickly, also got very sweaty!

 

17/08/2009

Rang and spoke to Paediatrician today to mention that he has started sweating again. Restarted twice daily dose again. Hugo very hyperactive tonight – very funny!! Had small vomit tonight, but managed to clear himself without much suctioning which is good.

 

15-16/08/2009

Been fairly settled over weekend, still sweating and bad tummy. Had a small vomit Saturday and needed suctioning, then fell asleep, but managed to overcome it well. Has lots of secretions on his chest and requiring more suctioning in the last few days.

 

14/08/2009

Hugo very unsettled overnight. heart rate of 130bpm very hot had to give paracetamol. Think it’s a reaction to jabs. Very grizzly today. Have halved diuretics and sweats started to get more regular again. Also got very bad upset tummy.

 

13/08/2009

Had 3rd set of Immunisations today, got very upset as did we, Nurses didn’t wash their hands between doing each baby – bit annoyed. We are going out of our way to be careful of Hugo catching any bugs/colds etc and the bloody nurses don’t know how to use basic hygiene. We didn’t realise until after they had done Hugo.

 

12/08/2009

Noticed that sweats have reduced slightly, is it diuretics??

 

11/08/2009

9am Appt with SALT. Just going to monitor Hugo until referral comes from GOSH for video fluoroscopy. Very pleased with the sounds he is making and feels he is at appropriate level for his age. Appt at Hinchingbrooke with Hugo’s Paediatricians. Had ECHO which showed there to be a slight increase in the enlargement of his right ventricle. Hugo got really upset during the ECHO ( a first for him) and cried very loudly for about two minutes. He became really sweaty and then fell asleep in my arms. We said that this was normal for him. Both doctors were looking at us a bit perplexed! Apparently this is not normal?? (Hugo is our normal so we didn’t really know any different) and a bit worrying. Hugo’s Doctor believes his heart is not coping very efficiently and these sweats are because it is struggling. She wants us to restart diuretics at a twice daily dose for two days and then once daily for three weeks until the cardiologist from GOSH comes to the hospital on 2nd Sept. She has also put Hugo in for a 24hr ECG monitor. He is dropping his heart rate fairly low at night when he is in a deep sleep (can dip to around 75bpm, but generally sits around 80-90bpm) and she wants to see if he is having any other irregularities.

Big blow, we were not prepared for that, had got so used to Hugo doing well in all other aspects that we had not felt any need to worry too much about his cardiac problems, especially as GOSH were so pleased with his progress when we were there last.

 

10/08/2009

Hospital for audiology appt. New ear mould fitting for his hearing aid. Found out his hearing aid battery was flat so aid not working!!!

 

9/08/2009

During his feeds today, Hugo has continued to have regular sweating. Starting to wonder if there is more to it?? He is fine in himself and very content. Once he was asleep and we put him to bed he again got really sweaty, so much we had to change him into a clean baby grow. Overnight also became so sweaty that we again thought we might have to change him, but it wasn’t as bad as earlier in the evening.

 

8/08/2009

Hugo has today been good and very chirpy, but has been really sweaty today. Seems to get very tired sweats a lot and then falls fast asleep. It is a really cold sweat and he is icy to touch.

 

7/08/2009

All very tired today – long week, and taken its toll! Had an easy day.

 

6/08/2009

ENT appointment at GOSH. Good report, very impressed with Hugo’s progress and extremely pleased that he doesn’t need any extra help with his breathing over than the suctioning. Is referring him to GOSH SALT team again for a video fluoroscopy to see whether it is safe for him to swallow and not aspirate into his lungs. This is great news, as I have been pushing our local SALT team to review him since we left hospital. After our appointment we met up with one of Hugo’s lead nurse’s from his time on CICU. We then went up to CICU to see the staff there and let them see Hugo. It was a very lovely half an hour. Hugo was ‘stolen’ from us by one of the lead consultants who took him round the unit showing him off to all. It was a very proud moment. The staff could not believe how well he is looking and were all very pleased to see him. It was a very lovely day and very good to see so many people who remain fondly in our hearts.

 

5/08/2009

Very tired after two days out, spent the day at home, not doing much except playing with Hugo. He is full of energy today and very excitable. He actually sat up for about 30 seconds on his own!

 

4/08/2009

John got up this morning and decided that he was not going to work ( not sure what kind of miracle happened overnight?) so we had our first family day out just the 3 of us. Great day, went to the Norfolk coast for the day, very tiring but good fun and enjoyed taking Hugo out for a change.

 

3/08/2009

Had our first big visit out today at Di and Anne’s in Aylesbury. Long drive took us almost 3 hours to get there, but Hugo was as good as gold in the car and on arrival we were all very spoilt and had a lovely day. Did find it a challenge with all of Hugo’s stuff. Car loaded with feeds, feed pump, feeding sets and syringes, bag for medication, flushes and gastrostomy bits. Changing bag, spare clothes and nappies. BOTH suctioning units and box of catheters. (not taking any chances this time!) wasn’t any room for John or me!!! Had a great day and really relaxed. Coming home, Hugo got very sweaty, he goes very pale and gets cold and clammy. When we got home he was soaked through, we had already put him in a baby grow so we had to change him. We put him in his cot and hooked him up to his heart rate monitor. HR was fine but Sat’s were sitting at 93%. We checked his probe was on properly and it was so we sat with him for a time, they stayed like this for about 10 minutes before going up to 98%.

 

1-2/08/2009

Hugo is much brighter now the antibiotics have kicked in. He had a more settled weekend. Slept a lot and has tolerated all of his feeds again, although his volume is still at 100mls.

 

31/07/2009

Hugo slept really well overnight. We have reduced his feed back to 100mls. The problems with Hugo is that because he has nothing orally we never know if he is not up to feeding. A bottle fed baby would refuse or stop feeding if they didn’t want anymore or have had enough. Hugo cant do this. So we spoke to his Doctor about bringing down the feeds for a couple of days, just to make sure he is getting enough to satisfy him but not push him too much. His antibiotics have kicked in (got a very upset tummy) so that’s a good thing, and I have been giving him doses of paracetamol as he is grizzly. He is not himself today and extremely pale and dark around the eyes – looks surprisingly like John when he feels ill!!

But all in all a better day, he is not quite right but doing ok considering. Has slept a lot all day but we are getting our smiles so all is not too bad in Hugo’s world!!

Delivery of medical supplies – still not right, sent disposable syringes and told me to re-use them???? I give up, will just have to continue buying our own!

Rang community nurse as still awaiting yanker suckers for suctioning.  No one available to bring them out to me so told me I had to go and collect them. I explained Hugo’s ill and I cant drive with him. Will not be able to get into Peterborough until Monday now – ridiculous! Also need suctioning equipment for the suction unit, but still not been able to get any. Currently having to wash out and reuse all tubing  find it very annoying that we have to keep asking and keep being told that we need to reuse stuff, so much for using sterile equipment!!

 

30/07/2009

Today started ok, Hugo very snuffled and lots of secretions. Gave him a dose of paractemol mid morning as slightly unsettled but he had a good sleep and seemed to perk up afterwards. One of the nursery nurse’s came up from the GP’s to weigh him. His weight has gone up 600g to 6.14kg. Quite a big jump in 10 days. He has again stopped his diuretics and we are wondering if he is not coping without them the same as before. He is very wheezy again and we also wonder if this is down to such a big weight gain, so I rang and spoke to Hugo’s Doctor who asked us to bring straight down. Hugo had just finished his feed and was struggling with lots of mouth secretions. He had had a small vomit just after the feed but then bought up a lot of thick secretions and started to vomit again. John and I tried to suction him, but he continued to vomit and ended up with very thick secretions coming out of both his mouth and nose. Hugo was starting to become very distressed and had gone really pale. We couldn’t suction his airway quick enough and he was starting to struggle with his breaths. We both started to panic a little. We managed to clear him but he went straight off to sleep. We hooked him up to his monitor and his sats and heart rate were ok so we gave him ten minutes before putting him into the car. We had just got down the road when he started to gag again so I got john to pull over so I could suction him. Turned the suction pump on and it wouldn’t work. Bugger. Raced back home and picked up back up suction and then raced down to hospital. His Doctor realised that we were late arriving and was waiting for us, she checked him over. His chest was very rattley so she sent us straight down to X-ray. His x-ray was fairly clear, few streaks but not as bad as she had expected. She did swabs, is quite sure its not swine flu but a viral infection. He also had a rash all over his back and neck. She has started antibiotics and we are having to monitor him over weekend. Very relived that he didn’t need admitting. By the time we left he had really perked up and was giving his flirty eyes!! We drove home thanking our lucky stars that our ‘dry run’ was not a real emergency, although both admitted that next time we could do with being slightly more organised!! Unfortunately there will be a next time but we just need to be a bit better prepared. John managed to sort out suctioning unit so now working again – phew!

Had his feed at 7pm but became really unsettled again and we decided to stop it partway through as were worried he would start vomiting again. Took a while to settle but he fell asleep around 7.30pm. We then started to put away all the bags (4) and equipment that we had just dumped in the door on returning from the hospital – thank goodness we keep overnight stuff ready!!

 

29/07/2009

I had an appt today at Hinchingbrooke so we all went and afterwards did some visiting. This is the first time we have all gone out for a few weeks. We are being so careful with Hugo and not risking him picking anything up – but goodness it was nice to get out and see some friendly faces. We popped into Nana and Granddad’s and then into Dad’s work. Hugo was on great form and a happy bunny although he is wheezing a lot today and has lots of nasal secretions as well as mouth secretions. We are going to see how he is tomorrow and then perhaps speak to his paediatrician at Hinchingbrooke.

Delivery of medical supplies. Still having problems with syringes. Still not getting enough to last the week.

 

28/07/2009

Hugo bit brighter, still having lots of secretions especially early morning. Is wheezing lots more and has a slight rash on his back although it looks to me like heat rash.

 

27/07/2009

Hugo not his normal self today. Went with John to his Physio (John having big problems with his back!) and Hugo and I sat in the car. Hugo got really unsettled and ended up having to sit holding him for some time. Would not go back into his car seat. Lots of mouth secretions and needing more suctioning than usual. Wondering if he has picked something up?

 

25-26/07/2009

Easy couple of days, John working so taking it steady, had a long walk sat am. Hugo still tolerating the extra feeds, lots of babbling so he is definitely gaining something from all those calories. Started to become snuffled Sun, got few more secretions than has had over last few days and wheezing quite a lot.

 

24/07/2009

Finally managed to up Hugo’s feeds to 120mls per hour. He is tolerating it well so far and we have not had any more sickness in the past 48 hours. We have just bought a high chair for him and he is sort of enjoying sitting in it, although you have to really amuse him while he is in it. We have managed around half an hour tops before he is yelling to get out. Hugo’s problem is that he has spent so many months laying in a bed that he finds sitting up quite difficult still and does breath a lot harder and has been wheezing a lot more than usual. The extra feed seems to be giving him more energy and he has been rolling today. We are really trying to get him onto his tummy as much as possible as he has great head control with it. Also had  hand clapping today and big giggles – very amusing!!

 

23/07/2009

Much better day, no sickness and a perky happy Hugo – Phew! Found out today that he loves us clapping for him, he keeps laughing when we do it and then claps his hands together, exciting stuff!! Must be exhausted after last few days as he was asleep by 6.30pm.

 

22/07/2009

Good start, no problems with first feed and started the morning well. Had physiotherapy at 9.30am very impressed with him and what he is doing. Thinks that his rolling onto his tummy is coming on very well and feels that he is strengthening well. Looks like we will have to wait now until sept before seeing her again.

Hugo had a great morning and afternoon but after his evening feed he had another vomit. It seems to be secretion related and again it took a while to calm him down. We are starting to worry that he may have a cold.?? Tough few days on the poor love!

 

21/07/2009

Really bad start, another vomit after only 12mls of first feed. After calming down we decided to get up ( 5am! ) and sit with Hugo while he continued his feed,  just in case he had any more problems. Got half way through and he vomited again. Became extremely distressed and we struggled to get him to stay still while we suctioned him, so he became more unsettled and it took ages to calm him down again. Eventually just fell asleep exhausted – really unsettling for us, its dreadful being the bad guy!

Once he had woken he was much more himself and had no more problems for the rest of the day.

 

20/07/2009

John’s birthday. Difficult start, Hugo had his feed at 6am and did not tolerate it, he had a very big vomit and we took a while to suction him and then settle him. It took some time before he calmed down, but he did eventually settle. Once we got him sorted we took him downstairs and made a big fuss of John’s birthday – Hugo even handed his Daddy his birthday card!

 

Hugo tolerated the rest of the days feeds and had no further vomits so hoped it was a one off? Went down to John Lewis to pick him up some new bits, ended up buying too many things for him!!

 

18/07/2009

Hugo woke at 5am and I got his feed set up and on. Being in the house alone is always more difficult. It doesn’t really bother me, but there is always the worry of something happening and me being on my own with Hugo. John got back in around 6ish and took Hugo downstairs so I could have an extra hours sleep – very much needed!

Had an easy day, popped out for a drive in the car just to get out of the house, still daren’t go anywhere crowded. Hugo in a good mood and very chilled out today.

 

17/07/2009

John didn’t work last night so it was nice to have a Friday with all of us at home! Hugo went down to sleep around 8pm and slept until 6.30am, I gave him his feed and he then went back to sleep until just after 8am!!

Dad and Karen popped into see us today which was lovely, Hugo was showing off with his toys and I think impressing them both!

 

27/05/2009

After 139 days in hospital we have bought Hugo home.

 

24/05/2009

Again allowed home for the day, had very nice afternoon, Hugo seems to settle well at home, wonder if he enjoys the calm and quiet? He vomited his last feed so have to watch him; although think it could be that he had his meds too close to the feed. Suctioned him and he was fine.

 

23/05/2009

Picc line has been removed today with no problems. Hugo has also gone over to 4 hourly feeds and is tolerating very well. The nurses are talking to me about going home on Tuesday!!!!

 

22/05/2009

GOSH outpatients appointment to see Ophthalmologist and Cardiologist. Both appointments went well although running over an hour late in each clinic. Our Consultant thinks weight gain is fluid retention. Hugo’s weight has increased by 300g since Tuesday. He is happy with how Hugo is doing, and can’t see any reason why we can’t go home ASAP! Got back from GOSH to ward at 10pm – very long day!

 

21/05/2009

We took Hugo home for the day! 18 weeks and 6 days since I left my house and it was so good bringing my baby son home, the first time I have been home since I left on Friday 9th January. Hard work but good Got back to the hospital around 8pm.

 

20/05/2009

Hugo has gained 200g. Considering still on monogen milk seems to be possible fluid retention?

 

19/05/2009

Hugo’s diuretics halved.

 

18/05/2009

Finding it hard being at Hinchingbrooke, doing all of Hugo’s feeds, meds and cares wonder when we can go home with him?

 

14/05/09

First night at Hinchingbrooke was good. Hugo slept really well and is very settled. It has been a very busy day with lots of meeting new Doctors, Nurses, dietician and pharmacist. Hugo had an audiology test today; he has significant hearing loss in both ears, another blow and diagnosis to take in.

 

13/05/09

Hugo woke very unsettled at 3.30am. Does he know we are leaving today? At 7am I took Hugo down to CICU to say goodbye to the wonderful staff there. It was so sad actually saying goodbye, we took lots of photos of Hugo with staff, we seem to have got to know most of the staff in our time here. John arrived at 8am and we started to pack everything for the journey. He had a discharge ECHO which was good and also an ophthalmology appointment which was ok. So many people have come up to say goodbye it is so hard saying goodbye.

I have passed a very special gift onto a very special little boy we have met here and I cried saying goodbye to his mum, we will always be thinking of him. I can’t believe how much these people have made such an effect on us; we can’t thank them enough for all they have done for Hugo. As we left the ward after 123 days of being here, there were so many tears and so many of the staff waving us off, it was unreal and truly touching. The journey back to Hinchingbrooke hospital was very odd, driving back into home territory was very bittersweet and it seems like forever ago that we were last here. The new ward is so quiet!

 

12/05/09

So a very bizarre but good day, we are now leaving tomorrow!!!! There is a bed available for us and it has all been bought forward. We have learned today how to suction Hugo using a catheter, well I have learned and John has watched, it is harder than it looks and I think it’s going to need some practicing. We have both done all his meds today. The Doctors want his Picc line to stay in for another 7 days just be certain that he has no problems. We have said our goodbyes to John (hospital Chaplin) today and I find myself realizing I will truly miss his and Jim’s visits to me and Hugo, they have both been a very valued support to us and I will miss them.

 

11/05/09

Today we have started to learn Hugo’s medication and how to give it to him. He is currently on 10 meds and it’s all a bit scary being in control of this. We are also going to be taught how to suction him. There is now talk of us leaving for Hinchingbrooke later in the week. Exciting but scary too! To think that 5 weeks ago he had just had his surgery.

 

10/05/09

We have had another great day today, we were again able to take Hugo out for a walk and ended up bringing him back to our accommodation where we had some lunch and just sat with him for an hour, and it was like a normal family should be – wonderful. John and I have talked a lot today about what we have found out in the last week with his Bulbar palsy and confirmed CHARGE diagnosis; he has such a struggle ahead. We keep saying that he is happy and seems content and doesn’t seem to be fussed by what has happened to him – he is so amazing.

 

9/05/09

All of Hugo’s blood results have come back clear and he had a great night. One of the Doctors asked us today if we want to go back to Hinchingbrooke first thing Monday – we told him NO!!(Was actually a bit more than no, but all in jest!) we need to wait a few days longer we think.

We took Hugo for a walk in the pram today, we actually left the hospital and went to the end of the road and for a little walk around the small park at the end of the road. On the way back he fell fast asleep and then slept for a couple of hours. He was moved back into his room at around 6pm. He was brilliant for the rest of the evening.

 

8/05/09

Hugo has had his gastrostomy fitted. He has done very well and is spending the night in HDU. He is in good spirits and they are very happy with him. If he continues to do well the plan is that he may move back to Hinchingbrooke within 10 days! Everyone is really happy with him today and we feel more positive. He has taken the gastrostomy feeds well.

 

7/05/09

Hugo has smiled a lot today; he is such a happy little boy. We have had back his genetic results today and Hugo definitely has CHARGE syndrome. One of the genetic team came to see us and explain all about the results. It seems that Hugo has a new mutation of the gene so it is almost certainly a one off and is unlikely John or I are carriers, however we have been asked to have the blood test to be completely certain.

 

6/05/09

We have had a very good chat today with our Consultant in regard to Hugo’s Bulbar test results. He had told us to remain hopeful and that Hugo may well be able to swallow but it will be a longer time scale rather than short. He has also discussed that the Gastrostomy may be within the next few days, either Friday or Monday. We owe a lot to him; he has been so kind and patient with us and Hugo. His words have helped and give me a bit of hope.

 

5/05/09

Hugo was unsettled early morning. He woke at 4am, but settled at 5.15am. At 6am I woke to find the nurse by his bed looking a bit sheepish – Hugo had decided to pull out his NG, I think he did it in protest! She couldn’t get a new tube back in, so we had to wait for one of the senior nurse’s to come and get it in. Hugo was very happy to have no tube though and was very smiley and happy all morning. The play specialist bought Hugo some great sensory toys today; one of them was a mirror chime about which he actually seemed to like. He is not completely off the morphine and his nappy rash has almost cleared.We got our results from neurology today. Hugo has Bulbar palsy, he is not safe to swallow and it is unclear how much of a swallow he has. A big blow, so sad that he has another disappointing diagnosis.

 

4/05/09

Hugo was awake from 1am again unsettled and upset. The nurse took him out at 4am so I could try and get some sleep. He is pale today and just doesn’t seem right. During round today it was discussed why he is on IV fluids. Apparently there was a mix up reading his observation chart and it was thought he was having hourly aspirates of 20ml back from his feeds and not absorbing any of his feed.

I explained that I had been with him all day (all the time) and no one had actually aspirated his tube. I was very disappointed about this and explained how frustrating it is that no one was listening to me and it seems to be a lack of proper communication. He is obviously hungry so was put straight back onto feeds and he settled very quickly. He is not having the gastrostomy tomorrow it has been postponed, not sure when too. I am quite glad as I don’t feel he is well enough after the last few days.

 

3/05/09

Hugo woke at 4am very distressed. The nurse ended up taking him out of the room so I could get some more sleep as he would not settle. He just cried and cried. He had 5 bolus pushes of morphine, doses of paracetamol and Ibuprofen and still did not settle. At about 8am he suddenly just suddenly went to sleep. During ward round one of the Doctors discussed that it could be his pick line. It seems that every time he gets anything put through it, he spikes a temperature and becomes distressed and unsettled. he has decided to start antibiotics and also try and get a new cannulae in for access… he had already been given some IV fluids during the morning and early evening IV fluid was connected and his feeds halved. I was told this was because of him becoming dehydrated and they were not sure he was absorbing his feeds. His gastrostomy is now booked for Tuesday although I am worried he won’t be well enough. He has had full bloods and U’s and E’s. His CRP and infection markers have not risen which is a good thing so it remains to be seen, but if it continues they may have to remove his pick line.

 

2/05/09

Hugo has had a good day; I can’t believe he is 16 weeks old today! He has only had one push of morphine and the Doctors on ward round were pleased with him. One even asked if I had spoken to anyone about us going home this week??? The nurse on today asked me if I wanted to take Hugo for a walk around the hospital in a pram but I said no because I felt uncomfortable going alone with him and I am still not confident to take him off the ward. His antibiotics have now finished and they are now deciding how to reduce his diuretics. He still has a very loose tummy and has a very sore bum! I have tried to leave his nappy off for most o the day. I had a visit today from Di, Anne and Lyndon which was really nice and it was good to have some company. Hugo has been very smiley today; it has been a good day.

 

1/05/09

Hugo has had a good night. His morning was ok, and he was seemingly ok. At around 10.30am he was asleep in my arms when his monitor went off, as I looked at it the heart rate was reading 50bpm. I looked down at him and realized he was very pale, very cold and sweaty, I shook him but he was unresponsive so I shouted for help. One of the nurses rushed across from HDU and told me to put him on the bed, she called for help.

By the time the Doctors had arrived he had more colour and seemed ok. I think they may have thought I was being neurotic, and they felt that Hugo was just in a really deep sleep. However later in the day one of the nurses sat with him while I went and had a shower and he did the same thing, she had another nurse there too. The Consultant decided to get an x-ray done and also a 24 hour ECG tape. We went down and got that done. He was not completely settled and even after going to sleep his heart rate was quite high; he was also sleeping with his eyes both open. He has again needed a bit of suctioning today.

 

30/04/09

Hugo has had a very bad night. At 3am he became very distressed and unsettled, he was crying a lot and seemed very much like he was last weekend. At 3.30am he had some paracetamol but that didn’t help so we gave him a bolus of morphine at 4am. He still didn’t settle and ended up having a further 3 morphine bolus pushes. He did not settle and then spiked a temperature of 38.9. The nurse called the Doctor who suggested taking bloods, they all came back ok. He fell asleep at 6.40am for a couple of hours. On ward round the Consultant felt he was having pain from his tummy; he wants to see what the cultures grow before taking him off antibiotics. He settled and remained that way for the rest of the day. John has had to go back to work this weekend so he left for home at 4pm, I miss him already! One of the Doctors decided that he should go onto IV paracetamol incase he is not absorbing the medication. Neurology have been in to do the test on his swallow, they will probably get back to us tomorrow. Hugo has had a lot of secretions today and needed quite a bit of suctioning.

 

28/04/09

Hugo was again very unsettled overnight and very grizzly. This morning with the Doctors we discussed that it is possibly due to his feeds being so low. He is still a bit tender with his belly. The pain team have been up and reduced his morphine again, but left him to have bolus dose’s if he needs it. His feed was increased and he really perked up over the morning. He has had a couple of bolus doses of morphine and not needed any paracetamol until 9pm. He still has a very runny tummy and the dietician tomorrow wants to start adding some extra calories to his feeds. Neurology has been up to see him. She has explained that his Dandy Walker variant is most likely the cause of his swallowing issues. She is happy with how he is doing at the moment and feels he is doing all the right things for his age and development. She is referring him for some tests. These will show if the bulbar muscle is working properly and if he will need some help with regard to this swallow. I really hope this is not a big problem for him.

 

27/04/09

Hugo has had another bad night, I didn’t get to bed until 12.40am and he woke at 1.10am. He cried until 2am and was given meds but vomited them back up again. At about 3.30am he woke again and remained distressed and would not go back down. John arrived at 7.15am and asked for a Doctor to come in as soon as possible. The Consultant arrived just after 10am, were by now very upset and explained how let down we felt and unhappy that Hugo was so unwell. Hugo was still very distressed and the Consultant asked how long he had been this way, we said all weekend, he checked Hugo over and then left the ward. He came back and explained that he was putting Hugo back onto IV morphine and IV fluids and reducing his milk to give him a break, Hugo also had a large dose of diuretics. He then apologized to us for how the weekend had gone. SALT came back to see us, they are concerned that he has an unsafe swallow and cannot take anything orally for the foreseeable future.

We had an MDT meeting today, during the meeting it was discussed between neurology and SALT a possible link between his brain, swallow, palsy and Brady cardic episodes. Neurology is going to come and see us to discuss this and the options. While discussing this with our Consultant and Nurse I completely fell apart. Mum was here today and I just started to sob and sob, completely lost it. It has been a really bad day and it all just caught up with me. Hugo has slowly improved over the day and become more settled.

 

26/04/09

Hugo is not right. I had another bad night with him awake and very unsettled and distressed. The nurse on could not understand why he was so distressed. At 6am I asked for a Doctor to come and see him as he was getting more upset. She checked him over and agreed he was not right and behaving as if he is in a lot of pain. He is really pale again. Bloods have been taken and his HB was low again, it is now 8.5, I felt that he was showing signs of needing blood. I was told that he needed to wait and he was given an iron supplement instead. John made me go over to the accommodation for a sleep during the afternoon, but I couldn’t sleep and rang to see how Hugo was. They had just decided that he did need a blood transfusion and it started around 3.30pm. He has been sleepier today than unsettled but when awake is still really distressed. His tummy is still very loose.

We have spoke to the Doctors about how we feel he is not right, today has been so hard again as we feel the Doctors are not taking us seriously and think we are over worrying. We have requested that he be moved back into HDU and one of the Doctors agreed and said that he would move this afternoon and it has not happened. Tonight Hugo is the only patient in the ward and it feels very isolated.

 

25/04/09

Hugo has been extremely unsettled overnight. He seems very distressed, he woke at 1am and has not slept and was just crying and very distressed. There was a nurse on with him who had never seen him before, so she just thought he was being a crying baby. He had his oral morp at 1am and became very unsettled after. He continued to stay upset, at 4am he became even more distressed. His monitors were continually going off and I ended up getting very stressed as the nurse was not in the room and could not hear them. I’m sure everyone else in the ward wished we weren’t there. It was a dreadful night. When our day nurse arrived, she was one of Hugo’s more regular nurse’s. she could see he was unwell. At ward round they saw Hugo first. They agreed he was not right and did cultures, FBC’s, U’s&E’s and another x-ray. The x-ray showed a change on his right lung. His bloods showed an increase in his white cell count and his CRP had doubled. He has been started on 2 antibiotics. He is very pale and just so unsettled and has been all day. Another nurse suggested giving him Ibuprofen. He had a dose at 7.30pm and then just flaked out. He is working harder with his respiritory rate and when he is unsettled seems to be recessing more.

 

24/04/09

Hugo is not quite as bright today. He was ok when I arrived but has slowly deteriorated throughout the day. It was decided that he could be moved out of HDU. We were a bit uneasy about this as he had only been on HDU for 2 days and as he was a little bit under the weather, we would rather him stay in HDU over the weekend. The pain team came up during the morning and decided to take him off morphine IV and put him on oral morp. He had a final dose of IV morphine at 10am, he had his first dose of oral morp at 12.30pm and around 2pm he fell asleep. We had seen Speech and language (SALT) and she had a little try of Hugo swallowing from a teat, but he was not cooperating very well. We were moved out of HDU at about 7pm. He woke shortly after and became very unsettled. He was very limp and listless. The nurse agreed that he was not right. One of the Doctors came to see him and felt that he was ok; one of the Consultants also came up and checked him over. He got an x-ray to make sure all was ok. They also did a blood gas which was ok, although his potassium and HB were a bit low, HB was 10.6. I am staying with him overnight on the ward. They plan to do more bloods in the morning. We are not happy with him, he doesn’t seem right and we are sure he is brewing something.

 

23/04/09

Overnight Hugo has had a couple of slight Bradycardic episodes although he is very relaxed. His diuretics have been reduced as has his morphine. He has slept well during the day and when awake is very perky. He has been smiling lots today and we have been taking lots of photos of him as he looks really well. His weight has dropped slightly so the dietician is keeping a close eye on him. We are so pleased that he is doing ok.

 

22/04/09

Good first night in HDU. The plan is to monitor him for the next few days. The plan is to book him in for a gastrostomy at the end of next week. He has not needed much suctioning and his morphine has been reduced. The dietician has been to see him and see how he is getting on with the Monogen milk. She is considering adding some extra calories to it. He became a bit unsettled late afternoon so was given some paracetamol which really helped. His calcium is very low today so he has had a bigger supplement. He is still on antibiotics and his chest is still a bit sore.

 

21/04/09

John has gone home this morning for a few hours. When I got into the ward I was approached about Hugo going up to the ward today! I explained that I was worried as it was only two nights ago that he was recessing so much and looking like he might need to go back on the prong. They feel that Hugo is doing great and that he will be ok to move off of CICU. Our Consultant came to check Hugo over for me. His chest is still slightly red and he said that will be carefully monitored. We have been given the go ahead to contact him if we are worried or have any concerns. I was also offered a meeting with the Consultant in charge of the ward to go over any concerns we might have. Luckily mum was up for the day so I was not alone without John dealing with everything. The meeting was good and I feel happy that Hugo is heading in the right direction. Due to the antibiotics Hugo has a very, very sore bottom. His CRP has come down and he looks much better. We finally left CICU and were moved into HDU at 7.30pm.

 

20/04/09

Hugo has stayed off the prong and had an ok night. His chest is still very red and he has been put on a second antibiotic which is very strong. His temperature had reduced but then went up again and his CRP has increased quite a lot so the doctors want to keep a very close eye on him. He has had an ECHO and an x-ray which have both come back ok, and his heart is ok and chest much clearer. He is breathing less hard than yesterday and not recessing quite so much. One of his antibiotics has been stopped. Hugo really properly smiled for the first time today!! He has been really chirpy all afternoon, it was so lovely to see him looking so happy and his eyes were sparkling and he was moving his arms and legs about very relaxed. John is popping home for the day tomorrow to sort out some bits.

 

19/04/09

Hugo has slept well overnight although he was still quite warm. He had a temperature of 38 and was a little unsettled. At ward round I expressed my concerns, the doctors feel he is doing ok, but are going to keep an eye on him. During the morning he had started to recess a little and his chest was looking red. After lunch his temperature had gone up to 38.4 so we tried cooling him with a fan and some ice. There was a procedure on from 3-7pm so we could not get in. when we got back Hugo was very hot, recessing and had already had two Brady episodes and did not seem good.

He had been given antibiotics as his CRP and blood count was high, he obviously has an infection somewhere. He continued to recess and seemed quite listless; he didn’t even get upset during suctioning. One of the Doctors came over to see him and decided that he should have the prong put back in. However, when the Doctor came over to do it, he calmed down a little and they decided to leave him a while. He then relaxed and became more chilled and stopped recessing so much. We are now going to have to wait and see how he goes overnight.

 

18/04/09

Hugo has moved onto Monogen milk with no problems and had a good night’s sleep. His prong came out at 11.30am! His x-ray was good and shows no signs of any more problems so his drain was taken out at 1pm. He became quite upset but I was able to pick him up straight away! He was chilled out soon and loved his cuddle. Early afternoon me and Hugo’s nurse gave him a bath which he really loved, he really loved having his hair washed. He did become quite warm after his bath, I wondered if it was because his cot heater was on and he had warmed up too much after getting dressed. Later on he was moved back into a big cot. His temperature was still high at 37.9 and he was hot to touch. He had a blood gas which was ok, but he has runny stools. We changed him into just a vest and left him uncovered. The doctor came to access him and is happy with his breathing, and will be happy to leave the prong out overnight if he manages ok.

 

17/04/09

When we arrived today Hugo was looking really well. He seems much more relaxed. Unfortunately it has been detected that Hugo has a chylothorax in his chest. When his drain was inserted it may have ruptured a lymph node. This can cause problems with clotting in his blood. He has had to be put onto monogen milk for the time being and is having daily injections of dalteparin which will help thin his blood to stop it clotting. He will need a scan on Monday to check he has no clotting and obviously the doctors will keep an eye on him over the weekend to make sure he shows no signs of any problems. Our Consultant came to have a chat with us about the plans for Hugo. We are going ahead with the gastrostomy as it is felt that Hugo will benefit from having it long term and it will be easier for him to go home with it.

The plan tomorrow is to have another chest x-ray. His drain has had to be removed today as it had moved and was in the wrong place, it was also leaking, unfortunately the surgeon who put it in did not put any purse strings in and he had to have some stitches put in as it was taken out. Tomorrow the plan is to remove his prong!!!

 

16/04/09

When I arrived this morning Hugo’s heart rate was really low – 68-60bpm. We think that this is because of the clonidine. One of the Doctors had a look at him and woke him. She thinks that it’s the medication. His milk was switched off at 6am for him to be extubated. He was taken off just after 1pm. He got very distressed to start with. He had the nasal prong on CPAP put in, at one point we were worried he may have to go back onto the vent but he proved us wrong and once he settled he was ok. Late afternoon Hugo became very Brady cardic and his heart rate kept dropping when he was in a deep sleep. At one point it went down to 48bpm! John and I were starting to become concerned as we felt this was too low and we requested to stay during ward round to speak to the Doctors. One of the consultants explained that it was down to the clonidine. They turned it off and also stopped his morphine for half an hour and then the morphine was turned back on. He did get a bit unsettled for a while but once his feed was restarted he settled really well and went to sleep.

 

15/04/09

When I arrived this morning, Hugo was asleep but felt cold and clammy. When he woke he became very distressed and upset. We tried to settle him and checked him over to make sure it was not his nappy or anything that would usually upset him. His feed had been stopped as the plan was to extubate him. After ward round it was decided not to extubate him and his feeds were restarted. It was also realized that his ET tube needed to be moved as it was too far down. Once this was done he settled down. His clonidine was also increased as they want to try and withdraw his morphine. This completely zonked him and he spent the rest of the day fast asleep and did not stir at all. There is a planned MDT meeting tomorrow and they are also planning on extubating him tomorrow, his ventilation settings have been slowly weaned down throughout the day. His chest is looking ok and the drain is staying in for the time being.

 

14/04/09

Hugo has had his line inserted today. He has been given a Pick-line instead of a Hickman line as the doctors don’t feel he needs a permanent line and this can be removed before he leaves hospital. When he came back his central line and pacing wires were removed. His poor little chest is so bruised and tender. His phnumerphorax is still there although much smaller and is lung is much more inflated. His ventilation rate has been turned down as the plan tomorrow is to extubate him. Late evening it was decided to remove his other drain, he became very unsettled and distressed after and started to de-saturate. John questioned whether his rate needed to be turned back up. He was given some chloral first and then when that made no difference his ventilation was increased. John also questioned if his ET tube was in the right place as there had been a query over this earlier. John didn’t leave the ward until 1.30am.

 

13/04/09

Hugo has been very unsettled during the early hours of the morning; he has lost a cannulae in his head and has a lot of secretions. He was given another x-ray which showed his phnumerphorax had become bigger and he has had to have another drain inserted under his arm. His cloinidine was stopped for a few hours because of his lost line but was restarted late afternoon. He had another ECHO which shows his heart to be doing ok. At the moment his right chamber is pumping a lot harder as the muscle is much stronger and this is the reason why it has affected the liver.

 

12/04/09

Today is Easter Sunday; I had always aimed to be home by today!! When we arrived this morning, Hugo was heavily sedated and the complete opposite of yesterday. The overnight nurse has also stopped one of his meds. This was later restarted. After ward round they stopped his clonidine and decided to remove one of his chest drains. His phnumephorax is smaller than it was so they are happy to remove the drain. We felt Hugo was quite pale and grey and he continued to sleep throughout the day. During the afternoon he began to de-sat again so they did another x-ray which seemed ok. Late evening Hugo became unsettled again so the clonidine was restarted.

 

11/04/09

Hugo has had a bad overnight. He has not slept well and is withdrawing from his sedation as he is unable to have any because of his Liver problems. He has now been given some clonidine which seems to have worked and he fell to sleep in the early afternoon. Both feel very unhappy today. Not feeling very confident with certain things and can’t help worrying. Our consultant came to see us about how Hugo is doing. He is happy his LFTs are returning to normal and are much lower. He was worried that Hugo had not yet come round properly and we explained that he had but had been given Clonidine to make him sleep. He wants to get his Hickman line inserted on Tuesday and then they plan to remove his drains and the central line.

 

10/04/09

Overnight Hugo has had regular blood gases and liver function tests (LFT’s). He had a high amount of ammonia but this has now reduced. He is passing a lot of blood when we got in this morning. A sample has been taken and sent. His electrolytes are still low and he is still having supplements. His neck is very sore; we think it is a pressure sore from where he is positioned and how puffy he was. I am cleaning it to make sure it does not get any worse. His feeds were restarted at 4pm. He was quite unsettled during the day but has settled over the afternoon into the evening. I did all of his cares and gave him a cream and foot rub which he loved. This evening his urine has a lot less blood in it. His chest wound looks much less sore. He had another de-sat to around 80% but again came back up. John was a bit worried about him tonight so stayed until the early hours.

 

09/04/09

Hugo dropped his sats overnight. He has had an x-ray which has shown his pnumethorax to be slightly larger. He has finally started to pass urine really well and by the end of the day has come off the IV furosemide and aminophylline. He has started to come out of his paralysis and is waking up well. He has started to move his hands, feet, mouth, eyes and body. It is great to see him alert slightly. He has had a slight de-sat and also become bradycardic, think this could be because his electrolytes are low. His liver function is high so a full blood count has been done to check this is just from bypass and nothing else. He has also started to pass blood in his urine. His blood count showed all his electrolytes are low so he has had to have supplements to try and top them up. Hugo had an ECHO to check his central line was still ok, because of the placing. He has been given more fluid and his milk has had to be stopped in case the liver is struggling.

 

08/04/09

Hugo has remained ok overnight. He is still not peeing and his lungs are still wet. He has had a chest x-ray and he has a small phnumothorax on his left side. His furosemide has been increased and he has also been given another drug – aminophylline to see if this helps. He has had an ultrasound and although he is retaining fluid he is not putting too much pressure on his organs. He is very puffy today and looks very much like a little sumo wrestler! His colour is very pink and his HB is 14.5 today which is good. His electrolytes are ok, although calcium is low so he has been supplemented. His BP is ok and he is now off the vec and is becoming more awake, although this is only noticeable by his numbers on the monitor. His heart rate is still increasing at times, especially when he is touched.

The Consultant came to see us again, he wants to give Hugo just a little longer before putting the PD catheter in, although have been a couple of other Doctors who want him to have it in now. Within ten minutes of this conversation Hugo did a big wee! He then continued to pee – we think he is proving a point. His heart is looking good, he still has a small VSD but they don’t feel that there is a problem with it at this moment. He also spoke to us about Hugo having the gastrostomy. We want to wait a while. Hugo has also been booked in to have a Hickman line.

 

06/04/09

Hugo has been very relaxed overnight and when we arrived was quite chilled and did not wake until after ward round. He has been very perky and bright eyed. He has been kept slightly sedated. His operation was scheduled for 1pm, but he did not go down to theatre until after 2pm. We were able to walk down with him and then kiss him goodbye – it was heartbreaking. The hours dragged. We were warned by the anesthetist that Hugo is a high risk case and he may have problems. I have never felt so helpless, scared, and sick or agitated in my life. If I’m honest I had got myself worried that he would not get through the operation. At 7.30pm we rang the ward – he had just got back. We finally got into see him at 9pm. He looked better than we had expected. His chest was closed and he was not on dialysis. He was weeping from his chest wound. They had problems getting lines into him and ended up putting his central line into his atrium and an art line under his arm. When we got in he was not paralyzed????? And when he heard our voices he began to wiggle and move about. He ended up pulling out his head and foot cannulae. He was also getting very agitated and his heart rate was becoming raised. When the doctor came over to check on him, he instantly put him on Veconium to paralyze him. At 11pm his temperature had risen and his heart rate was erratic so they gave him adrenaline, he also had ice packed round him to try and cool him. I went back to sleep before John who came back quite late.

 

05/04/09

Hugo had a very settled night and was totally relaxed this morning. He had to have his pre op bloods this morning, but the doctor had no luck with getting any out. After ten minutes of trying they gave him a rest as he was getting very fed up. We had a quick meeting with one of the cardiologists who discussed Hugo’s operation tomorrow and explained the risks to us. Because he has numerous medical problems Hugo has a higher risk of death, 10%. Also because he only has one kidney his could have more problems after the surgery from being on bypass. He is likely to have problems passing urine. There is also a chance he may take longer to recover due to his various problems and he is more vulnerable. He had to be paralyzed for his blood as they could not get any access so decided to take it from a femoral artery. He has needed a lot of suctioning today and has been quite unsettled. He has been given quite a bit of sedation this evening. He had a slight de-sat while being suctioned and he went slightly grey. Matt and Keeley came to visit us today with Betty. She looks so lovely and is doing well.

 

04/04/09

Hugo smiled for the first time today!! He has been relaxed and chilled and slept a lot of the day. He is reacting quite badly to any of the tapes used for his sats and temperature probes. He has not needed as much suctioning today.

 

03/04/09

A settled easy day, Hugo has not needed anything doing to him today so has slept a lot and remained relaxed – he needs his energy for next week. He has had a raised temperature, but is still on antibiotics.

 

02/04/09

Hugo was quite perky this morning, after handover the nurse noticed his art line was very leaky. She tried to keep it in but it was too loose and she had to take it out! Hugo had his CT scan at 10am. We were able to walk down with him which was nice and we didn’t feel so stressed leaving him. His CT scan showed that the shunt is kinking and stopping the blood flow through to his lungs. The meeting was held today where they have decided to operate on Hugo. He is going to have the full repair rather than re-insert a new shunt. One of the cardiologists came and went through what they need to do to Hugo. It is a lot more than we had expected. The plan is to operate on Monday. They will have to monitor Hugo, if his shunt fails completely between now and Monday they may have to operate before. This is definitely the reason behind all of his episodes, it’s a relief to know that we have an answer, but we are terrified. He has needed a lot of suctioning again today and also needed his face tapes changing again.

 

01/04/09

One of the Consultants came to see us today about Hugo having a CT scan, this way they will be able to get a clearer and more accurate picture of his shunt. He will have this tomorrow. He needs to have another cannulae inserted into his upper body by tomorrow, he now has a new art line in. today he has needed quite a bit of suctioning and is producing lots of secretions. He had his face tapes changed so had to be paralyzed and sedated.

 

31/03/09

Overnight Hugo has lost his art line. The plan is to insert a new one as well as a central line today. There is no plan to extubate Hugo. At 11.30am he had another ECHO, this showed his shunt was not working properly. Basically the blood flow is not reaching his heart correctly. This explains his episodes and de-saturating. Hugo will have to have the full repair and as soon as possible. There is a meeting on Thursday where they will decide when they will operate. We had a meeting today with the ward manager in regard to our concerns over Hugo’s overdose and how we are feeling. Today we have had Hugo christened. John is the hospital Chaplin and he did a beautiful service for us. We had always wanted him christened before his full repair and decided that today was the right day.

 

30/03/09

Hugo is very pale this morning and is not his normal self. One of the Consultants came this morning to do and ECHO. The shunt has a good flow. Hugo’s cannulae in his hand has blown this morning so he needs to have another put in. Hugo needed a blood transfusion and it has been decided that he needs a more permanent line access. One of the doctors has suggested to us that Hugo needs to have an NJ inserted to rule out aspiration. We are very unhappy about this and think he does not need to have one fitted. Then one of the registrars came to ask us to sign the consent forms for Hugo to have his gastrostomy done, reasoning that while he is ventilated they may well get on and do it. We have still not been made aware of any plans for his cardiac surgery and are extremely upset and worried. Hugo has looked dreadful all day and his blood transfusion made no difference to his paleness.

He is very listless and unresponsive even when he is being suctioned which is totally unlike him. At 6.30pm we had a meeting with a Doctor and nurse. We were told that Hugo does not need the full repair as his shunt is working fine and that he is still too small to have the repair. We have also been advised that Hugo should have the gastrostomy and NJ inserted as soon as possible. We are very unhappy with how today has gone.

 

29/03/09

A settled overnight. His feed was stopped at 10am for him to be extubated at 2pm, not sure why they want him extubated? At 11am his central line somehow got pulled out! This is a real bummer and we hope that it doesn’t become too difficult to put new one in. spoke to one of the Doctors about Hugo having the full repair. They are coming to do another ECHO first thing tomorrow morning. Hugo during the afternoon has also managed to lose a head cannulae, but one of the doctors managed to get another in quickly. Just after this I noticed that his head dressing was bleeding and had soaked the dressing. He needed to have pressure put on the wound to stop the bleeding and while this happened he de-saturated. John called the doctors and they turned Hugo’s ventilation rate back up and also increased his oxygen and decided not to extubate him after all and review him tomorrow. His sheets needed changing and I had to pick him up while the nurse and John did this, bless him he really relaxed when I held him, it was heartbreaking.

 

28/03/09

Hugo remained stable and sedated overnight and today. He is still on heparin, morphine, chloral and antibiotics. He has had two episodes of de0saturation when he got very upset and was crying, when this has happened he has also raised his blood pressure. The nurse gave him a bolus of morphine and he settled quite quickly. However he had one early evening and he became extremely unsettled and was fighting very hard against the nurse. It ended up with two nurses and me having to hold him down to try and stop him pulling out his lines and ventilator tube! He is a strong boy now and obviously proving it to us. He had to have a bigger dose of morphine to settle him, but he remained settled and then slept for the rest of the night. We are still trying to get our heads around what has happened.

 

27/03/09

Hugo has remained stable overnight; he is still paralyzed and is very settled. We just can’t believe his is back in intensive care. He had another ECHO and it was felt that his shunt was cleared and working properly. We were seen by the Doctors and they have explained that they need to monitor Hugo to check he is ok and make sure that the blood is flowing correctly. He is going to be monitored and his platelets are being kept an eye on. Later on another Doctor came to see us, there is a worry that his shunt is not working after all.

The concern is that there may have been a blockage but because he has been given IV heparin it has cleared the clot. However because he has had a number of ‘episodes’ since his shunt and first collapse they are now considering doing his full repair. The idea is that if they do the full repair and these episodes continue then there is another problem with him, but it takes the full repair out of the equation. We have also been told that Hugo was give a very large drug overdose, I will not go into this too much but he has had checks and they were clear so he should not have any long term damage. Today has been unbelievable. We have gone on and on about how he was not looking well and his de-sats and no one seemed to take it seriously.

We KNEW something was wrong, call it intuition, but he is our son and we just felt that he was not right. Tonight he is doing ok and we just have to wait and see if he remains stable over the weekend and see what the doctors have to say on Monday.

 

26/03/09

Hugo slept well overnight and started the day well and seemed really settled. He needed a suction at 5am as he was really snotty. He then slept until 9.30am. During ward round it was discussed that Hugo could possibly have an airway problem. Our Doctor came and spoke to us about this. Around 3pm Hugo had a feed and about an hour later he became very pale and de-saturated. John and the physiotherapist were with him and shouted for help. The Doctor came and checked him. I had been out and got back just after this happened. At around 4.20pm Hugo again de-saturated, he was on oxygen but this did not help. The doctor came back and ordered a blood gas; he also decided to do another ECHO. Hugo was ok for a time but became more distressed by the ECHO. His sat’s were dropping lower and lower and had dipped into the mid 40s%, it had become very scary. The Doctor then told us that he could not see the shunt clearly and was worried there was a problem. A crash call was given and we again had a room full of people very quickly. We were then asked to leave the room and the doctor explained that he was not able to see the top of the shunt and Hugo was being taken down to CICU where he would be incubated until he was stable. We cleared the room of our things and took them over to our accommodation. We were eventually allowed into CICU to see Hugo after he had been incubated. He was hooked up to heparin, morphine and veccuronium to paralyze him. He was heavily sedated, he looked awful, and we were both physically shocked by his appearance. They are worried that his shunt has become blocked and they may need to operate, we have to wait and see how he goes overnight. He is critical.

 

25/03/09

Hugo has had a good day today. He has continued to have low saturations today, dropping at one point into the mid 50s%. The Doctors are still happy with his cardiac side and feel Hugo is ok. We appreciate this but we are worried as to why his sats keep dropping. During one point today when Hugo was suctioned his sats dipped very low and his hands went very blue. The sats came back up. He is still more comfortable sitting up and when his night nurse arrived she made a small hammock in the bed for Hugo to sit in and stop him sliding down the cot. We have also put a pillow under the mattress to elevate him more.

 

24/03/09

Still having wafts of oxygen because he has been having low sat’s. He has tolerated his feeds well with no problems. Had an ECHO, Hugo was ok, a bit unsettled, but the ECHO looked ok. We are trying to get to the bottom of why he keeps de-saturating. One of the nurses’s sat with Hugo for an hour so John and I could go and get something to eat which was very lovely of her. When we got back she was having a nice cuddle with him. One of the ophthalmologists came to see him again. He is happy with him today, although he needs to keep having his eye ointment as his right eye is still quite dry. John stayed with Hugo tonight so I could get a full night’s sleep.

 

23/03/09

Hugo has had a good day; he has been wide awake for most of the day and only had a little nap of about half an hour. He has had a couple of de-saturations but not needed any oxygen today which is good. He has again seemed to be more comfortable upright so I have had him sat up quite a bit, I also tried him in the baby sling which he didn’t seem to like! Still no date for his gastrostomy, looking at possibly next week.

 

22/03/09

Hugo woke at 5am for a nappy change and suction then went back to sleep until 10am. He has been good all day. Discussed his de-sat on round, there is still no reason why it is happening. He is still getting oxygen wafts and his sat’s are sitting in the mid 70’s%. Has tolerated feeds well. It is my first Mothering Sunday. I have had a lovely day. Di came over to see me and bought me some lovely chocolates and a card. It has been great to spend all day with him. We have been here ten weeks today! Hopefully tomorrow we will know what the plan is for the next week in regard to him having the gastrostomy. He has been more comfortable with his breathing today when sitting upright.

 

21/03/09

No more funny episodes and Hugo was fine overnight, however his saturation levels are slightly low today, around the early 70’s% but keeps dipping down into the 60’s%. He is now back on a monitor. Through the day he has been really settled and has slept well and tolerated his feeds. As the day wore on his sat’s began to sit in the 60’s% more than the 70’s%. The staff decided to do a blood gas just to check his levels were ok as he was a little pale. Two were done and both were ok. As the day went on his sats became lower even dipping to 61/62%. Once handover was done Hugo was remaining around 60% so the nurse in charge decided to give him wafts of oxygen. This helped bring him up slightly. He had another gas which was again fine but the nurse’s were still unhappy so called a Doctor. He arrived and decided to do an ECHO. His heart was fine and shunt fine. Hugo fell asleep. Am unsure why his sat’s are so low?

 

20/03/09

Hugo had a big suction when he first woke up this morning and he was very snotty. He woke at 7am as he needed his nappy changing. He had managed to wiggle down the cot and his leg was hanging out of the side! The physiotherapist came up to see him. He was asleep and she was gently trying to wake him when his monitor started to beep. It showed him to be very tachycardic with a heart rate of 247bpm, he had gone very rigid and we tried to wake him but he was unresponsive. We called for help. I thought he was dying, it was awful. The room quickly filled with people and by now Hugo had come round, he was given an x-ray and that was clear and he had an ECHO which was also ok. I feel so worried something bad might happen to him. During the afternoon one of the cardiac liaison nurse’s came up to sit with Hugo for a while and give me a break as I don’t want to leave him. I ran and got a quick drink. When I came back I gave him a bath and had a long cuddle and he fell asleep very settled.

 

19/03/09

Hugo slept all through the night and remained settled. One of the surgeons came to see us this morning about the gastrostomy and he has put our minds at ease about the procedure and how successful it will be. I still feel that I don’t want to do it, but have to. Our biggest worry is about him having to go on the ventilator. It really is the best option for him to get stronger quicker. Hugo is better today than he has been all week. He had a vomit after his first feed and has a lot of snot up his nose which is making him gag. I feel low today; I am tired and feel like Hugo is being pushed to his limit. He has been through so much and I find it so unfair that he now has to have the g-tube operation. I really feel like we are never going to get home. Hugo is such a brave boy and he has been so strong to have got this far. John has again gone home to work over the weekend.

 

18/03/09

Hugo has had a rough day today. He was woken at 5.45am to be weighed; he sounded very snuffled and was unsettled. When the nurse gave him his feed he vomited it straight away. I was really worried and sat him up on my lap and rang John who came straight over. When the day nurse came on he suctioned Hugo and he settled straight away. During his next feed he again vomited. We are now worried he has a sickness bug.

On today’s ward round it was discussed with us that Hugo will need a gastrostomy. It is felt Hugo is not tolerating feeds well enough to justify not having one. He is going to have long term feeding issues and the Doctors feel that it would be much safer and more beneficial for Hugo to have the G-tube rather than try to continue with an NG tube. It will be a safer option to go home with and the big concern is that Hugo needs to gain weight and become strong enough to undergo his full repair operation. I feel slightly shell shocked. It really feels like two steps forward and one step back. We felt he was doing so well and would not need to take such a big step. I feel like my head has been banged against a wall. Hugo has slept most of the day and is really poorly, but doing ok.

 

16/03/09

Hugo settled at 12.30am and thankfully slept through until 5.30am. During ward round it was discussed about last night and moving Hugo back to Hinchingbrooke hospital. I explained that we had spoken about him going to Addenbrookes firstly then onto Hinchingbrooke. At 11am he had a bolus feed of 36mls, about half way through he vomited and became really distressed and needing suctioning. He also has very loose stools. He had a break off feeds and then went back to continuous feeds. He then fell asleep and slept all day. He is very pale. The nurse has said that they will do a blood gas tomorrow and an ECHO to make sure his shunt is ok.

 

15/03/09

Hugo has been well throughout the day and tolerated his feeds well and been very settled. I have had some lovely cuddles with him. His feeds have again been increased today and moved over to bolus, but he became unsettled late evening. He started to vomit but swallowed it back down and again became very listless and pale/grey looking. I went and got the nurse who asked for the Doctor to come up. The Doctor who came had not had much contact with Hugo and was not worried by his appearance. I then asked for a second opinion as I was desperately worried. Another Doctor came up to see him and thankfully it was a Doctor from CICU who had been involved in Hugo’s care. He agreed Hugo did look pale and unwell and suggested Hugo going onto continuous feeds overnight and a possible x-ray in the morning in case he has aspirated into his lungs.

 

14/03/09

My first morning waking up with my darling baby boy. Hugo slept like and angel, he sleeps so well. I gave him a bath first thing. He looked so happy when we put him in the water. When he got out he fell straight back to sleep. He woke around 10am and very suddenly started to scream and seemed to be struggling, he had secretions coming out of his nose, I called the nurse who came and suctioned him. By the time ward round came Hugo had gone very grey; the Doctor was unhappy with his colour and said he would come back later to check him. A short time later he went really listless and started to cough and choke. I called the nurse who again suctioned him. He cleared a lot of secretions and Hugo fell fast asleep again. He remained good for the rest of the day. He is now totally off oral morp. He needed another suction about 10.30pm and then went off to sleep.

 

13/03/09

Hugo remained on two hourly feeds overnight and this morning was much more settled. I got in very early around 7am. I spoke with the nurse and explained that I did not want any changes to his feeds until I had spoken to a Doctor. On ward round the Doctor agreed that Hugo should stay on two hourly feeds until Sunday and then review him again. I was told that Hugo would be moving off HDU today into a side room. Why does all this happen when John is not here??? It is a lovely thing; I get to sleep in the same room as my baby for the first time. Really miss John, although enjoying being in with Hugo.

 

12/03/09

Today has been very hard. Hugo had a good overnight; he has been moved into a big cot. On ward round it was decided that Hugo should be moved over to 3 hourly feeds. I was not happy with this but was told that he would be able to have the volume given slowly over an hour. After two feeds the rate was decreased to 45 minutes. As Hugo finished the feed he became very distressed, his tummy was distending and he was working hard and had started to recess. About an hour later the nurse aspirated from his NG tube and he still had 11mls of undigested milk. She decided not to put it back because of how distressed he was. He would only settle on my shoulder. Hugo had become very pale and was working very hard. I asked to see a Doctor, but there was not one available. I asked that his feed be put back to the lesser volume given two hourly. This was eventually agreed and I reluctantly left him.

 

11/03/09

Hugo’s spinal x-ray has come back fine and shows no signs of scoliosis. His bloods are also good and his electrolytes are at good levels. John and I have been talking about having Hugo christened before we leave here as we have come to know the hospital Chaplin very well and would like him to do it for us. Matt, Keeley and Betty came to visit us today – Betty looks fantastic. She bought Hugo a very special gift which we are very touched by. We took Hugo for a little trip out of the ward down to the coffee shop; Hugo became very unsettled and was not so sure on the new environment!! One of the nurse’s had come with us and we were very grateful for her taking us out for a little break. Tonight John has gone home.

 

10/03/09

Hugo’s feed has been changed today to inftrini which will help him to gain weight. So far he has tolerated the change. We have today tried to sit him in a specialist physiotherapy chair; he did really well and stayed in it for about 20 minutes. He has had a great day and been very relaxed and settled. I had a meeting with family services today and ended up in tears talking about Hugo’s CHARGE. Then got a text with some photos of the pets which made me cry. John has to go home tomorrow to work as we can’t afford any more time off. It’s going to be very hard without him here. Hugo had another bath tonight and he loved having his hair washed again, and once out and dried and settled he fell fast asleep bless him.

 

09/03/09

A good day, feeding ok, had bloods taken and became very upset. He then slept for the rest of the afternoon. His feeds are being changed for a much higher calorie diet to try and gain some catch up growth as he is now behind on a child of his age weighing only 3.36kg.

 

08/03/09

Hugo slept from 8pm until 10am, when we arrived he looked completely exhausted. When his first feed was started he became extremely upset and unsettled. We were quite unhappy with how he looked. We decided that we did not want him to have another feed until he had seen a Doctor. The Doctor checked him over and it was decided that he could be withdrawing again, so he was given a small dose of oral morp. This seemed to settle him. He also had a feed and became much more settled and happy. Both John and I had a lovely cuddle and he spent the rest of the afternoon happy and settled.

 

07/03/09

Hugo was very unsettled overnight and during the day today. He has terrible wind and is crying a lot. He had only had an hours sleep during the day. He is really suffering and crying a lot, unlike him. Very tiring day and can’t help worrying if his feed has unsettled him.

 

06/03/09

When we arrived this morning Hugo had been taken of his sats probe. We were slightly concerned but have been told that we have to get used to it not being on and relying on how he looks etc to see how he is. His feeds are 2 hours apart, given over half an hour and he has no attachments so we were able to wonder around the room with him! Neurology came to see him and want to keep him on chloral until he is off the oral morp. He had a spinal. X-ray today to check for signs of scoliosis. He got a bit upset during the x-ray.

 

05/03/09

To start our day we found our little man in a pram when we arrived, a sight I did not expect to see for a while! We were then asked if we would like to give him a bath, of course we would! So we gave him a bath and he really seemed to enjoy it. We did it together and Hugo loved having his hair washed, although he was a bit shocked when we first wet it. Sue took a photo of us giving him his first bath.He has come off his heart monitor now and is just on a sats probe. Ophthalmology came up to see him today. He was completely unresponsive to the eye checks, although he had just had his morphine and chloral.

 

04/03/09

Hugo slept well overnight. I was in very early. Hugo’s feeds have been reduced to 20 minutes at a volume of 18mls. He has tolerated this well and the plan is to reduce them to 10 minutes tomorrow if he manages ok. Endocrine bloods are back and he is doing well so they don’t feel any need to be involved in his care from now on. John and I had a session of basic life support training today which was quite daunting. We have also discussed the plan for how long Hugo will remain in hospital here; it could be up to another 6 weeks.

 

03/03/09

Overnight Hugo has been good and settled. He had to have a heel prick blood done and got very upset and ended up vomiting but was fine by the time we arrived in this morning at 7.30am. We felt very stressed that Hugo had got so upset and we were not there, tomorrow I plan to come in really early. The photographer was around again today and took some more photos of Hugo. I have also been allowed to dress him again – woo woo!Had a difficult start to the evening, Hugo needs nasal suctioning. Hugo had become very unsettled and cried for almost 2 hours. Once he was suctioned he was much more settled. He had some saline drops which also helped.

 

02/03/09

What a day. Hugo has again moved to Ladybird HDU. It has been a very unreal 6 weeks and we have finally made it back up here!! We were understandably nervous when we found out we were moving. Hugo was a little unsettled at first but once he was in and sorted he took quite well to his new home! He was so sweet as we wheeled him up to the ward; he just lay there watching it all pass him by.

 

01/03/09

Hugo’s tummy is still unsettled but he has been generally nice and relaxed. I cuddled him for a couple of hours this morning and he slept while I held him. John did some videoing of him. He is so lovely and beautiful bless him. The plan is to move Hugo up to the HDU on Tuesday if all goes well. Our overnight nurse had him swaddled and bedded down and he went off to sleep well. Claudine turned up tonight with a roast dinner!!!! Real food!!! . She has also bought us a casserole for the next few days. What a wonderful girl.

 

28/02/09

Hugo has an upset tummy today and seems to be in a bit of pain. While changing him earlier he pooed all over the bed! So I sorted him out and then picked him up while the nurse changed his bed sheets. I ended up cuddling him for an hour and a half as he fell asleep in my arms. He woke quite grizzly at about 11am and again had a very upset tummy. After his 12pm meds he seemed to settle but late afternoon again became very unsettled. One of the doctors came over to check him and said that he has a lot of wind in his tummy. He had some paracetamol and that calmed him a bit. After handover we stayed for a bit, but Hugo was very settled.

 

27/02/09

Hugo’s NG was not aspirating earlier and there was a worry it had moved so his feeds were stopped and he had an x-ray to check the position it was in. It was in the correct place. Because this took so long he could not have any meds. He was still a bit snuffled and the physiotherapist had been in to see him and he needed regular suctioning. Hugo’s feed volume was increased and we were concerned it was too much for him. He was also quite grizzly and sneezing a lot. After handover he was still unsettled and grizzly. After speaking to the nurse we did a withdrawal check and it was decided that he was withdrawing from his morphine, so he was given a bolus. Once he had this he settled well. If he continues to do well there is a possibility of moving him off CICU. We have been in discussions about John and I doing a resuscitation course before leaving hospital. There have also been discussions about moving Hugo to Addenbrookes hospital in Cambridge.

 

25/02/09

Hugo had a good night and slept well. He is having the cannulae removed as its not flushing. Had a meeting today with the social support worker, also saw the psychologist? Hugo had a slight de-sat earlier going down to 62% but he picked back up ok. The Great Ormond Street Tick-Tock fundraising magazine photographer come round earlier wanting to photograph Hugo. He took some lovely photos and it was nice to do something positive. When we went back in after handover Hugo was sleeping so soundly that we decided to leave early for the first time.

 

24/02/09

Overnight Hugo had a bit of a worry, his heart rate dropped to 50bpm; it came back up without him needing any help, very worrying! He has remained settled over the morning although he does seem to be recessing and working hard, but we are not sure if he is just tired. He also has a very loose tummy. Neurology has been down to see him and want to reduce his sedation slowly. They are happy with how he is doing for now. Have tried today to get some cannulaes in, so far they have only managed to get one in his hand. Had a good chat with our Doctor today, he is not overly concerned with Hugo’s recessing but wants to keep him in CICU until he is properly recovered and not having any ‘blips’.

Finished the night, very comfortable, his nurse had him all wrapped up with his little head cover on. He looked very chilled and was fast asleep when we left.

 

23/02/09

Hugo remained settled overnight. So during ward round they took out the prong!! He has managed well throughout the day and apart from some suctioning he has been ok and settled. Endocrine came by to discuss his electrolytes. He needs regular supplements, but he is producing the stress hormone and currently his growth hormone is ok. The plan is to monitor him, we have not held him today as we want him to rest, but hopefully tomorrow we might get a little cuddle. He has taken his dummy and is very relaxed. Settled well tonight.

 

22/02/09

Overnight Hugo was well and settled. Still needing some suction but has been happy today. Plan to monitor him over the next 24 hours and then see if we can remove the prong. We were given an email today from a couple in the states who have a son with CHARGE and would like us to contact them.

 

21/02/09

Overnight Hugo was sick and bought up a lot of food and secretions. There was a concern he would need to be fully incubated as he was recessing a lot. When we arrived this morning he was extremely grey and pale, he did not look well at all. The plan now is to leave the prong in and keep an eye on him. They have upped the dose of chloral but we felt it was too high. So it was agreed that it would be upped slightly. Hugo has also needed a blood transfusion. His colour is really bad and he just does not look well. We are really unhappy with his recessing. He has need a bit of suctioning as is very snotty.

There was a procedure on during the afternoon but when we got back in after 4pm he was looking a lot more comfy and much better colour. He was more awake and responsive too which was good. Hugo was also taking his dummy again. His blood did not arrive until 7.30pm and as soon as this started to go in there was a noticeable difference in his colour. He remained settled. We can’t believe he is 6 weeks old today, it has been a long road so far and I have found the last few days very, very hard.

 

20/02/09

6 weeks since I left home! What a journey so far. Hugo has had a fairly steady, comfortable day. He is very snuffily and has a lot of snot from his nose. Sample from Tuesday was clear, but another has been sent today. He has been really settled and only wiggled when he need a nappy change. He is still on chloral twice a day and his morphine has now been moved over to oral. The plan tomorrow is to change his heparin to aspirin so his central line can be removed. The plan is to see how he goes overnight and possibly take the prong out tomorrow depending on how Hugo goes. Had another MDT meeting today.

 

19/02/09

Hugo was extubated at 11am; he was put onto CPAP but went Brady cardic so was put onto the nasal prong. Thankfully his sats and heart rate picked back up. Had one of our regular nurse’s who had not seen Hugo do one of his tricks before and I think he was surprised. His NG tube had come out when they removed the face tapes and that was replaced as well. He restarted feeds at 4pm. Today we met a parent who has a child with CHARGE. We had pre-arranged the meeting. It was good meeting them but hard. I found myself afterward wishing that I had not met them. It has hit me what we are facing and I am very scared. I have spent a lot of time today very tearful. I feel so desperately sad that Hugo has so much to face as he grows older, although I know we will both do so much to make sure he enjoys everything he can. We said goodbye to some friends we have made here today. They were leaving and came to say goodbye and give us a card. It was very touching and made us so happy to see them leave, but sad to say goodbye.

I got to have a small cuddle with Hugo but he was quite unsettled so we decided to put him back in his bed. Our nurse was very helpful to us today and has put in a referral to see the psychologist as he feels we could do with some support and help in dealing with the last few weeks.

 

18/02/09

Had a tough start this morning, we could not get into the ward because of procedures. We have only had a couple of hours in with him today – very hard. His bloods have come back and show that he is producing the stress hormone but lacking in calcium so needs to continue supplements. Our lead Doctor came for a quick chat. He is happy with Hugo the last few days and they plan to extubate him tomorrow. Physiotherapy has again been up and she is working on moving his arms, hands and legs regularly.

 

17/02/09

Hugo James Trigg Reece was registered today! Physiotherapy has been today to try and work on Hugo’s flexibility. He is clenching his hands tightly and we need to try and help him stop. Dr Dixon rang from Hinchingbrooke to find out how we were getting on. We gave Hugo a bed bath tonight and washed his hair for the first time! He loved it and as soon as we finished fell fast asleep. It was wonderful doing that for him.

 

16/02/09

Hugo looked pale and grey again this morning. He also was very tired looking. He has need quite a bit of suctioning again today. One of the Endocrine team came to see Hugo today. They want to do blood tests as he is lacking calcium and they want to do some other tests.

 

15/02/09

John was back in at 6am. He had felt really unhappy overnight, Hugo was more settled. John came back to the room and I went over at 8.30am.Hugo was still very pale/grey. I didn’t think he looked his best and mentioned to the nurse. He had a lot of secretions and was recessing again. I was not happy with him and one of the registrars came to look at him and also felt he was not settled. His ventilation had been reduced for extubation so she suggested giving him some chloral and a bolus of morphine to see if that settled him. It didn’t so she put the ventilator rate up. This still didn’t work so Hugo was given a dose of Medazalam to settle him. Thankfully this worked and when he woke up Hugo was much more settled. He did have a lot of secretions and needed a lot of suctioning during the afternoon. He was able to feed finally.

 

14/02/09

I got in early this morning, we both felt Hugo was very pale and he was starting to recess quite a bit again. The plan originally was to extubate him early today, however as the general surgeon had not yet given the ok it was felt that it should wait until he has started feeds before taking him off. We were happy with this decision. John stayed with Hugo until 1am. The general surgeon came down just after midnight and gave the all clear to start feeds again, but it was decided to leave him until morning before starting. John had asked to speak to a Doctor as he was still unhappy with how Hugo looked. He was still pale and recessing quite a lot. The Doctor was happy with him and would see how he was in the morning.

 

13/02/09

Today has been an unusual day. Were relieved this morning to find one of the regular nurses on. Had felt uncomfortable leaving him last night and it was a relief to see a familiar face today. Late afternoon we had a meeting with the ward manager and one of the hospital’s senior staff. The meeting was offered to us as we are now regarded as a ‘long term’ family, meaning we have been in the Intensive care unit for longer than 14 days. The meeting was a great success in terms of discussing our concerns and what we have been through since arriving at GOSH. On arriving back on the ward we had a chat with one of the Doctors in regard to Hugo’s situation. He feels they need to get to the bottom of why Hugo keeps needing intubation. They think it might be sepsis, but there is a real worry he has a respiratory problem. It has been suggested that as a last resort he would need a tracheotomy. We pray it does not get this far.

 

12/02/2009

Hugo had a settled night. He did recess slightly but remained fairly calm. During the morning Hugo became very unsettled and went very pale. His temp was very hot and he was recessing more, his sats also became quite low – mid 70’s. The Registrar came over to look at him and after looking at his blood gas decided to give him a blood transfusion as his HB was low, he was also very pale. Not long after this Hugo became very mottled and distressed. He desaturated quite rapidly and after a few more minutes the Registrar decided that the best option was to incubate him immediately. They also decided to but in a new line while he was paralyzed. Hugo by now was very distressed and I felt really upset at seeing him so upset. John had gone for a sleep as was still not feeling well, so I was alone and had to leave when they were about to incubate. It took an hour or so to get him sorted and when we came back there was a procedure on – it took a while to get back in, when we did he had a much better colour. The tube was in his mouth which he seemed happy with. The doctors want to see if it’s an infection.

 

11/02/2009

After another settled night, Hugo started the day off well and quite bright. He has again taken his dummy this morning. John is still tired after yesterday so he did not want to cuddle him as he felt a bit rundown and is worried he may be getting a cold. I sat with him and had a lovely cuddle. While I was doing this physo again came by and we moved his position and also his arms just to work him a little bit. He then fell fast asleep for a while. His nurse had done some of his meds and we noticed that he was quite hot and was recessing again. The registrar came to check him, she was a bit concerned and was going to come back. I said to put him back in his cot to see if it helped him stop i.e. repositioning. He continued to recess and the Registrar decided to put him on CPAP prong just to be causous. He did get upset when they re-attached it, but he settled down well. During ward round we spoke with the doctor who explained that Hugo may likely have an infection in his central line. His blood count is very high so a blood culture has been taken. If he starts to go downhill anymore he may have to be fully incubated.

 

10/02/2009

Hugo had a lovely settled night. Today he has had a small wean off his morphine. His heart monitor was taken off at 11am and we got the results late evening which were that no abnormalities were present. There is no change with his care – he is going to be staying on CICU for now. I have again made it clear that we don’t want him to go up to the ward for now. Physio came down to see him again today and was happy with how he is settled. She has also bought some exercises to work on him to get him moving more freely. I was also able to have another really lovely hold today which he really enjoyed. I then a gave him a full over wash which we both enjoyed – him relaxing while I washed and creamed him. Late evening he did start to resses slightly. I pointed it to the nurse who called over one of the registrars. She felt he was doing it more and wants a sample of his secretions sent for a test. The nurse could not get enough up for a sample. He continued to recess for a while longer and one of the doctors came over to have a look. She suggested to keep a good eye on him overnight. We stayed and kept an eye on him until about 12am. John had come back at 10.30pm so he was also home with us.

 

9/02/2009

John has had to go home again today – I wish he could stay here. He got up early and went in to see Hugo – his night was ok and settled. They then had a long procedure – 2 hours and we could not get back in. finally managed to get in and then John had to leave. Spoke to nurse practitioner early afternoon, there is still talk of moving Hugo to HDU if he is well enough, but we really don’t want him to go up until he is fully feeding. I made this clear. The endocrine team want to do a test to check if his body is producing steroid. They need to wait until Friday as he has been on steroids to reduce his swelling when he was ventilated for 7 days on the advice of ENT. The test should see if he is producing his own. The general surgeon also came by to see him again. He would like to wait until Wednesday to be certain if he can start to have feed again. The neuro physiotherapist came to see him and did a couple of exercises with him which he responded well to. Hugo has again taken his dummy today and it is so lovely seeing him do something so normal! Me and mum were both able to cuddle him today – which was so wonderful. We miss John so much though. I found it so very hard to leave Hugo tonight with him not being here.

 

8/02/2009

Hugo was a bit unsettled when we arrived. John was not happy to leave him. The nurse gave him a suction to see if it would help and he had a huge amount of secretions. After they were cleared he relaxed and settled and went to sleep. Nana and Granddad came up and saw him. After we came back from lunch Hugo had taken his dummy again. John sat with him and he continued to suck it for over an hour – kept spitting it out and then asking for it again – bless. We have expressed our concerns about Hugo being moved up to HDU again and the doctor saw him today and said he would not rush him up. Our nurse tonight also expressed this so that has made us a bit happier.

 

7/02/2009

Hugo has today been settled and relaxed. He is still quite awake but overnight his nurse said she gave him a massage after his cares – which he loved!I have been able to hold him 3 times today which was amazing. John also held him – which was fantastic to see again. We both love him so much. I took some lovely photos of him today. We can’t believe he has changed so much since he was born 4 weeks ago! The time has flown by already. When the nurse gave him some meds earlier he did get very upset and also when John and I gave him a bed bath he had a very big tantrum and got extremely upset for a good 5 minutes.

 

6/02/2009

MDT meeting 2pm. Hugo has had a fairly settled night. He has not had any chloral or clonidine and is still very awake but very relaxed. We are now told that he will be nil by mouth for 7 days from Wednesday just gone. Hugo has continued the day being settled and it was decided to take out the prong this afternoon – he remained settled and has not had any problems this afternoon since it came out. He has still kept very awake through the day. Our MDT meeting went ahead and we had a meeting after it was finished with one of the Doctors, Nurse’s and Nurse practitioners. They went through everything over the last 4 weeks. The teams present were ENT, Cardiology, Intensivists, Ophthalmology, Genetics, Endocrine, Neurology, the Nurse practitioner and one of Hugo’s regular Nurses. They have mentioned that Hugo is more on the severe side of CHARGE. He will also have to go home tube fed and remain tube fed for some months. I found myself very upset hearing this, even though we already knew this. Our doctor was very caring and it was very touching to know Hugo is not just ‘another patient’. Its been a very hard week, but a satisfying day knowing how things are going. The plan next week is to monitor him and hope he stays off the ventilator.

 

5/02/2009

Hugo has had an unsettled day, his nurse today has been very caring and extremely helpful to him but he has been awake for most of the day and hardly slept. He has had his feed stopped again but is on TPN to keep his calories and electrolytes up. He is also having low and fast heartbeats. This is really worrying and the consultant came by to look at him. They also did a couple of ECG’s. Hugo remained awake and did get very upset again. We both find this so distressing as we can’t do anything while he is like this. I cant pick him up and cuddle him, its terrible. After rounds tonight the doctor spoke to us about the plan for Hugo. Tomorrow he is going to have a 24hr ECG to monitor why his heartbeat is being so erratic. He is also going to be reviewed by Neurology and Endocrine. He is also not going to have any food until Saturday. The general surgeon wants to make sure his bowel is ok before he is fed. He is still having daily abdominal x-rays to check if he has any air in the bowel. I pray for our little boy to get better.

 

4/02/2009

Today has been a tough one. We have seen a few different consultants. It has also been a good one! This morning Hugo was taken off full ventilation and put on the prong CPAP. Hugo coped well with this and during the day had no de-sats or dropping of heart rate. While the doctor did his extubabtion she allowed us to stay and when she had taken out the tube before putting in the prong she called us over so we could see his face – he is JUST THE MOST BEAUTIFUL BOY EVER, we love him so, so much. Late afternoon we saw the neurologist who assessed Hugo. We then had a meeting with him to discuss Hugo’s MRI. Hugo has been found to have a small Cerebellum and Pons which is part of the Brain Stem, also know as Dandy-Walker Variant. It is the part which determines his mobility and growth and development. We are unsure how he will get on, but we will have to wait and see.

The ophthalmologist also spoke to us about seeing Hugo as soon as he is off CICU. We also spoke with the endocrine registrar who is going to look into why Hugo’s electrolytes are so low.

 

3/02/2009

Hugo started today very chilled and relaxed, we got in early to see him as he was booked to go down early for his MRI scan. We saw the anaesthetist to just go over the anaesthetic and then at 10.30am he went down. After coming back up we spent time with him and did all of his cares. During the afternoon we had a short break and when we came back the nurse had changed his face tapes as they had become loose. During this he had desaturated and needed bagging up for a short time. Shortly after we arrived back he desaturated again. The floating nurse was on hand and came over and bagged him until his sats came back up. He has still not had the all clear from the general surgeon to restart feeds and we have again been chasing this up as we feel that he should now be starting TPN to keep up his nutrients. once Hugo had settled he was given a small amount of chloral which again knocked him out and he remained settled until the night staff arrived. If he stays settled the plan tomorrow is to extubate him.

 

2/02/2009

Hugo has been nicely settled again today. We had hoped he might have his MRI scan but it snowed overnight and London has come to a complete standstill – therefore the hospital is the same. There are a huge number of nurse’s who are unable to get in. luckily we have a regular nurse today who knew she had Hugo so she made sure she got to work to look after him! She is very good with him. The MRI was put off until first thing tomorrow. Hugo was very awake for a time but did get very unsettled and would not relax. He was given some chloral to settle him and it worked very quickly again and he relaxed and fell fast asleep almost immediately. He is still nil by mouth and again we are waiting for the general surgeon to come up and review his x-ray to see if he can be fed. The nurse did chase this up but to no avail.

 

1/02/2009

This morning Hugo looks so much better. He has so much more colour and is more settled than last night. He has been slightly more unsettled overnight but has been taken off chloral hydrate the sedative. His heartbeat is still erratic so this is being monitored. He had had 2 more ECG’s. There was nothing too concerning for the consultant to worry about. Another x-ray was taken to see about whether or not he can be fed again.

We asked for an update from the doctors but they are very busy and we will have to wait until tomorrow. He is only on IV maintance fluid so we are really going on to get him some form of food. His tummy is not distended though and he is passing harder stools again not having diarrhoea. Later in the afternoon he got a bit unsettled again and his heart rate went up and became erratic again so he was given chloral to calm him again. He only had a small amount but he seems to absorb it very quickly.

 

31/01/2009

This morning when we arrived Hugo did not look well, he was very pale and listless, we felt that he just did not look right. When the doctors did round we explained how unhappy we were. One of the registrars has been on for a few days and agreed that he was pale and not himself. When we came back after round it had been decided to put an arterial line in his groin. Because he was not well and it would be easier to access blood. The nurse asked us to come back in an hour while they did it. We were allowed a few minutes with him before they did it. We could not get back in for 2 hours. While we waited all the other parents were leaving CICU and none of them would make eye contact with us, we knew something was wrong. Hugo had another bad episode, his heart rate dropped and he desaurated. He went into cardiac arrest. He had to be resuscitated again. We were allowed back in but he looked very unwell. He was being hooked up to lots of new IV medication and was given extra morphine. He had another ECHO and an ECG as his heart rate had become very fast approx 170-180bpm, his sats kept dropping to around 65%. The doctors were worried he has an infection that could be the cause. I changed his nappy and he had a very upset tummy, he also had a very distended tummy, we mentioned this so the doctors had a look at his x-ray. They found a small amount of air above his bowel. They did a 2nd x-ray and the surgeon was asked to come down. He came to look at Hugo and decided to keep him nil by mouth for 24 hours as they think he could have a perforated bowel. By late evening he was still not picking up so was given a sedative and a blood transfusion. After handover we spoke to the registrar who hoped to monitor him for 24hours and see how he goes. A VERY HARD DAY!

 

30/01/2009

When we arrived today we were able to see a very settled Hugo. The nurse has not re-dressed him as he feels its better to leave him without clothes on for the time being. After ward round we were able to do Hugo’s cares and washed, changed him and did his eye care. The doctors are still waiting for his blood culture tests but want to do another ECHO and have asked the neurologist to have another look at him. They want to now possibly do an MRI but will review it over the weekend. The endocrine team also came up to discuss Hugo’s lack of calcium,magnesium, sodium and vitamin D. they asked John details of family history in relation to problems with epilepsy, his hernia and IBS etc. they also looked at Hugo’s genitals as there is a concern he has a under sized penis and this could be connected to the puturity gland.

 

29/01/2009

Hugo’s blood test came back that his thyroid is low, so he has been given vitamin D to supplement it. He I now on sodium, magnesium and calcium supplements as well. As these are all still low. His white blood cells are high so they have taken another blood to see if they have come down at all. at 11am they did another FBC and gas. Physio came by to do a check. They are not getting many secretions up but have sent a sample to check for any infection. We have had the test for Di-George back – negative! Genetics should come by to see me later. The blood cultures have shown that he has some form of infection. Because Hugo has had the shunt there is a very slight risk that he could get an infection in his heart. They are being very cautious and want to be 100% certain it is not an infection. The PH test came back neutral, but they don’t want to rule out reflux completely. Neurology are going to be called back to have another look. He has been put back on his reflux meds and is being fed by his NJ again and see how he goes until Monday when they plan to extubate. Genetics Doctor came by, she was pleased to see him awake and will speak to us once they have more info on his condition. John came back tonight – thank goodness, I have missed him.

 

28/01/2009

We got in early today as John has to go home. The nurse had found a baby grow for him to wear. He had a fairly settled night, needed a bit of suction but once done was ok. Physio came by but don’t think he is getting many secretions so they don’t need to work too much on him. The PH study lady came to put his pipe down and then he was x-rayed to make sure it was in the right place. At 1pm it was connected up. He was then given food through his NG tube and will continue while he is having the PH study done. A short while after this he had a slight upset and the nurse called the doctor over. Some blood was taken and a gas run to make sure all was ok. His blood gas was ok, but they sent a full blood count off to the lab just to be checked.

 

27/01/2009

Hugo has an infection in his central line.

 

26/01/2009

We got into see Hugo early and at 9.15am he went down for his barium swallow test to see if there are any problems between his windpipe and oesophagus. He came back with no problems – so another thing to tick off the list! At 12.30pm ENT came by and said they were taking him down to theatre at 1.30pm for a general anaesthetic to see what is up with his airway. Once back they gave us the diagnosis that Hugo has subglottic oedema and stenosis and left side vocal cord palsy. He has swelling to his vocal cords and larynx. ENT want to rest him for 7 days and also give him steroids to help the swelling go down, and then try and extubate him once the swelling has gone down. The concern is that if there is a problem again after extubation then the worst case sinario is to then do a tracheotomy.

 

25/01/2009

Hugo had a good settled night. His morphine has stayed upped and he has been put on antibiotics as his chest wound is slightly red and his red blood count is higher than it should be. The plan today is to rest him. He will be seen by ENT tomorrow morning for definite. At 6.45pm the consultant from ENT came to see us. He asked many questions about Hugo and how his airway was when he was born, how loud his cry was etc. I wonder if he has an idea of what may be his problem. We had one of Hugo’s regular nurses on again tonight and we had a good chat with her. Its nice as we are able to now relax with the nurses, which in turn relaxes us. It has been nice to have a day of no problems and Hugo being peaceful and not prodded or poked around.

 

24/01/2009

When we arrived Hugo was again on CPAP and he had a line in his head. He had a bad night and became very distressed again. We sat with him all morning and tried to settle him but he was so distressed and kept whimpering. We spoke with the Doctor who now feels something is not right and is keeping a very close eye. John said how cross he is that it has taken this long, but the Doctor said that he needed to be tested for other things first. At 2pm the nurse rang us to say he had again been incubated. We got a real shock on seeing him afterwards, he now has two cannulars in his head, one for morphine and one for IV matenance as he is again off food. This time the vent tube is in his mouth, he has also now got an NG tube for his drugs. At 6pm he was given 2mls of food. We did his cares and left at handover. After we got back the nurse tonight was very thorough and had changed and sorted him. His morphine had been upped to make him more comfortable and she had reduced his IV fluid so he could have more milk.

 

23/01/2009

Hugo has been very unsettled overnight and the nurse who now knows him quite well even wondered why he was not quite right. 10am, one of the ward sister’s came to see us about the concerns we had had on Monday. She was disappointed that we felt this way and assured us thatit would not happen again. We spoke to the Doctor about Hugo’s problems. He still feels it is down to reflux. After lunch Hugo’s prong was removed but he again did not cope well without any breathing aid. He was given oxygen but this did not seem to help him. The nurse called another Doctor over who asked if Hugo had seen an ENT consultant as he thought there could be an obstruction in his upper airway. He immediately put Hugo back on the prong as he was getting very distressed. I then held him but he was very distressed and really not happy. The Doctor tried a Swedish nose on the end of the prong and this seemed to work and Hugo settled immediately. He was given some paracetamol and food and we left at handover. John went back after and had a really long hold. When John left he was very settled and asleep.

 

22/01/2009

Hugo went down first thing for his NJ tube to be inserted. This went in first time. When he got back he was given 3ml of feed but that was then stopped so they could extubate him. We spent some time with him, changed him and did his eye drops. Spoke with the Doctor who wants him to come off the morphine then extubate him. Around 3pm one of the hospital chaplains came by and introduced himself, he is called John and seems very nice, he spent a good 20 minutes with us. Genetics came up to see Hugo again and have a chat with us. They do think he definitely has CHARGE and they will now do full testing for it.Hugo was extubated but did not cope too well and became really distressed, the nurse tried to put him on CPAP but he got even more upset. John held him but this did not help. He then became very Brady cardic and turned blue and then went limp again and seemed to stop breathing. One of the Doctors was in the next bay and came straight over and gave him some adrenaline. He was then put on a prong CPAP. This is starting to worry us a great deal and we feel something more is wrong with him, we expressed our concerns to the Doctor.

 

21/01/2009

Hugo had a good night, was told that today’s plan is to bring ventilation down, see the ophthalmologist, possibly do a PH test and feed him a small amount of feed. The ophthalmologist took photos of Hugo’s eyes, he felt they were quite dry and prescribed drops. He still thinks the left eye is far more underdeveloped than the right eye, he feels the right eye may be able to see the difference between light and dark. One of the Doctors discussed a neurologist coming to see Hugo and two came to see Hugo in the afternoon. They do not feel his problem is brain related and feel its more to do with reflux and don’t feel a need to do an MRI. Started up TPN to give him nutrients and extra calories as he is again off food. New medication has been started and he is having his eye drops, which seem to be making his eye much more moist. We were able to give him a wash and clean down and massage him with some cream as his skin is really dry and flaky.

 

20/01/2009

When we got in early morning Hugo was fairly settled but very sedated. He was still slightly paralyzed from being incubated and was on morphine and other drugs. He had two lines in for all of his drugs and a cannular in his hand. Hugo was given an EEG scan of his head (this showed fairly conclusive signs that he had not had a seizure) an ultrasound of his head also confirmed that there was no bleed on his brain. We spoke with the Doctor who felt the episode was due to acid entering his vocal cords – making his body shut down. Had a meeting with the family liaison nurse about our concerns with not being listened to in previous days.

 

19/01/2009

John arrived on the ward at 7.15am. On arrival he noticed that Hugo was not looking well, hishead had been shaved and he didn’t look comfortable and he had saliva gathering in his mouth. When he asked how his night had been he was told that after he had his 1am feed approximately half an hour later he was found chocking and in spasm with milk coming out of his nose and mouth. A doctor was called and his airway cleared. This had taken several attempts. We were told that they had been considering an x-ray or a return to CICU. John made if very clear he was unhappy about him being overfed and why because of it he was now poorly. At handover John again voiced his concerns to the new day staff. John asked for nothing more to be done with Hugo until Doctors rounds. I also spoke with the family liaison nurse about our concerns. During doctors ward round we again expressed our concern about the overfeeding. We also pointed out the chest wound which was still weeping. The Doctor was unhappy that it had not been seen to and asked for a swab to be taken. He also told us that Speech and Language team (SALT) would be coming to see him.

After round had finished Hugo seemed really unsettled, he seemed to be having difficulty breathing and we asked the nurse to suction his mouth. She then stopped his feed and gave him some paracetamol. John sat with Hugo on his lap. Hugo became very distressed and I went to find the nurse who had left the room. While I did this, Hugo went limp and grey. The nurse came into the room and we placed him on the cot, she shouted for help, a Registrar ran straight in. The Registrar called for more help due to his condition deteriating. A crash team was called. There were numerous doctors, nurses and consultants in the room. They worked on him for a time and managed to clear his airway and resuscitate him. Hugo was then moved down to CICU. By the time we had arrived on CICU he was stable and his colour had returned. It was decided to put an NJ tube down and he was given an x-ray. The Doctor said that this was not completely clear. An ECHO showed his shunt was

working well. He was taken down to have the NJ inserted but this was unsuccessful. At nursing handover Hugo was settled and doing well.

After handover John came back to see him but there was a procedure on so he could not get in. We rang to check on him and his nurse said that he was ok but a bit unsettled, we asked her to call us at any point in the night if there were any changes to his condition. At 11.20pm she phoned to say that Hugo had had another episode and had to be intubated and could we come over to see the doctors so they could explain what happened. Once up on CICU the Registrar explained to us that Hugo had seemed very unsettled and had suddenly gone very ridged and turned blue. They had to give him drugs to relax his body so they could get the tube down.

 

18/01/2009

9am arrived to see Hugo. Through the night he has had three funny episodes. He is still on continuous feed and on Ranitidine and Gaviscon.Throughout the day Hugo was taken off continuous feed and put on gravity feeds of 15mls an hour, then increased to 30ml every 2 hours. The dressing on his chest wound has not been changed and when we got it done his wound was very wet and sticky. The nurse did a swab but didn’t feel it needed any further action. John questioned whether any antibiotics should be given, was told no. We were also concerned about upping his feeds too much, but the nurse felt that overnight they could move up to 45ml over 3 hours. While his feeds were given during the day we held Hugo and kept him in an elevated position.

 

17/01/2009

Overnight Hugo moved bays. His feeding was 15mls an hour and was then increased to 35mls??? Hugo bought the feed straight back up. John and I felt that the feed was too big and mentioned to the nurse who said she was calculating his weight with what he should be on. We spoke to his nurse from the last few days and she agreed with us and spoke to the nurse. The nurse with him had been told he was feeding well and on full feeds. A while later we spoke to the Doctor about how Hugo was doing. The nurse had not long fed him and he had again bought some of his feed back up. The Doctor was present and said he felt it was acid reflux and that he should have his feed moved over to a continuous feed of 15ml per hour for the time being. The plan is to move onto gravity feeds the following day until he can be gag tested for further investigation. Hugo has been moved off of CICU to HDU.

 

16/01/2009

Hugo had a good comfortable night, he is still on pain relief but stable. His line was taken out of his umbilical cord as it is no longer needed. During the morning it was felt that he could do with some blood. Hugo is A rhesus negative the same as me and he was given blood late morning. In the afternoon his chest drain was removed and stitched and the doctors felt that his ventilator could be turned down in order to remove it tomorrow if possible. The nurse had done a couple of checks on Hugo and was slightly concerned about whether or not he had a fully working gag reflex and that he might also have acid reflux. These are very common signs of CHARGE and she had made a note for the consultant.

 

15/01/2009

Hugo had another comfortable day. His nurse has got him very settled and he is really relaxed. His feeds are still going well and she is gradually increasing them, but not much as she feels it necessary to go slow because he has not got the tolerance for it yet. It was decided that they will extubate today and we had to leave for that. They extubated him but he struggled for some time. We had to leave again because of a procedure and it took a couple of hours before we could return, we stayed for a while and Hugo was coping ok but then we had to leave for another procedure. When we got back in at 7pm he was coping well. Christie had him swaddled and he was on some oxygen but was really relaxed. He was able to start feeds again on a very slow basis. Christie said that he needs to really slowly build up his feeds, he would not cope well if overfed.

 

14/01/2009

Operation Day

Hugo had a comfortable night. When we arrived to see him he was doing ok. We had been told that he would go down for his op second on the list. We stayed with him all morning then had a break then went back in until he went down to theatre at approx 1.45pm.He came back up at around 5.30pm but there was a procedure going on in the ward and we were unable to get in to see him until around 7.30pm. He looked comfortable and they were pleased with how the shunt had gone. Hugo was very sedated and fast asleep.

 

13/01/2009

Hugo had a comfy night and was kept nice and calm. In light of yesterday’s scans and tests we asked to see a doctor at some point. As we were expecting Hugo to go down for his op we were surprised to find out that he might not go because a priority case had come up in the early hours. Had a meeting around midday with Dr Sullivan and Dr Ann Karimova the intensive care Doctor. They asked if we had been aware of what was done yesterday and if anyone had mentioned their findings. I explained that I had been aware of what was being done and had spoken with the ophthalmologist and the sonographer. Dr Sullivan explained that looking at all of Hugo’s symptoms that it was pointing in the direction of CHARGE association/syndrome. This is a genetic disorder and they would need to test to confirm this. We agreed that we were happy with these tests. Until this is done we just have to wait and see what happens. Dr Sullivan said he was disappointed by the news as he had hoped because my amniocentesis was clear that Hugo would only suffer the heart problems.

 

12/01/2009

7.45am rang in – Hugo slept well. 10.45am Hugo doing well have attached him to CPAP to enable him to breath better. Some bubbling from his mouth. 11am, able to hold Hugo for some time. Bloods taken for testing: Genetics. Antibiotics also given. Once put down on the theatre list Hugo allowed some milk, 3mls once an hour. While being held the nurse felt Hugo had calmed a lot and his obs were better. Put back into his cot at 12.45pm.After coming back from break Hugo had been put onto a ventilator as he had not coped very well and doctors felt it would be better for him. Doctor spoke with me and explained that they would do it anyway for tomorrows op so it would help him relax. 4.05pm tried to do ultrasound but left as he was getting stressed. 7.30pm ophthalmologist did series of eye tests. Discovered Hugo has problem with his optic nerve not forming. May not have full if any vision. Will need to do more tests after cardio op. Another ultrasound done on head and body, could only find 1 kidney. Late evening John arrived.

 

11/01/2009

Hugo had good night – responding well to drugs. Transferred at 9.20pm to GOSH, arrived at 10.45pm. Left him as doctors doing ECHO he is coping well.Before we left Hinchingbrooke John was able to see Hugo! The nurses had cleared the room behind SCBU so he could look through a window into the room from an old store cupboard. John was elated. Then when CATS team arrived they let John see him once he was in his travel pod. It was so amazing seeing the look on Johns face. Hugo was stable all day even on the journey he remained stable and slept the whole way. He is just so wonderful and we are so happy with our little boy. One of the CATS team has expressed her concern that he does not seem to have a good sized nasal passage and also his ears are slightly deformed. She feels this could be some cause for concern but told us not to worry too much.

 

10/01/2009

Hugo James Reece today was born at 6.17pm weighting 7lb 2½oz. He was born to Simon and Garfunkal’s ’Bridge Over Troubled Water’ a very healthy pink colour no blueness he was born by an emergency caesarean after a 23 hour labour which I found extremely hard and full on.So far he is doing very well. He was cleaned up after birth and I was able to hold him. He was then taken to special care where he was looked after by the neonatal consultant. So far he is doing very well and is not on a ventilator. His sats are great and he has had the prostaglanson drug to help keep his heart working.John came up to see me late tonight I showed him Hugo’s pictures. I will never forget John’s face when I first saw

him. He thanked me for Hugo – we cant believe how amazing and beautiful he is. I am so glad John came to the hospital. I have never felt so happy. I can’t believe I am a mummy at long last.

 

9/01/2009

So it has been 5 days since John was diagnosed with chicken pox. The baby is now 5 days overdue and I am feeling all over the place. John has had a dreadful few days and is not really feeling better. He has become very ill and I have never seen anything like it. He has so many spots its unbelievable. He is also dreadfully poorly in himself and cant keep any food down and is utterly exhausted. However today is the first day that he has slept and although he is still feeling terrible he is actually slightly better. I just can’t believe what we have been faced with in the last few days. It is totally unbelievable that we are faced with such an awful situation. Last night I slept badly again and find myself awake listening to john worrying that he is alright. I was awake again at 5.30am and find myself lying there wondering what the next few days will bring. I am so worried about whether or not John will be able to be with me when I have the baby and I am so worried about what John is going to feel if he cant be there. It is such a bad situation and I am trying so hard to pull myself together and not lose it. Mum has been great and so many people keep phoning, Di has also been great and will come down to see the baby down to London if needs be. Because of how bad John has been Hinchingbrooke decided to test my blood to make sure I have anti-bodies against chicken pox. Thankfully as I have already had it they came back positive and also my immune system is very good so I am unlikely to have any problems and Hugo should be ok once he is born as he will also have anti-bodies against it too. I have also been able to change my day of going into the hospital until Tuesday so we hope that John might be well enough. Last night I again prayed that all would be well and John can be there to see his son born. I will continue to pray until he arrives safely. Diary from time in hospital.

 

9/01/2009 AM

Waters broke at 7pm! I hated having to leave John at home. I think it was the hardest thing that I have had to do for a very long time. Knowing that he will not be at Hugo’s birth is just so sad and he won’t let me take the video camera either!! Arrived at Hinchingbrooke at 8pm. I was told that I would be sent home but ended up staying. Nana and Granddad arrived to see how we were getting on. Nana and Granddad had been out for dinner, so Nana was very drunk – highly amusing and made mum and I laugh quite a bit as she was just clinging onto Granddad’s arm!I can’t believe John is going to miss our sons birth. I feel so sorry for him and feel like I can’t do this without him, its good that mum is here with me. I have spoken to John lots and he is ok – its so heartbreaking him not being here. My contractions get stronger by the hour. At 2am I am told to take a sleeping pill. I don’t want to – but do as I am now getting tired. At 6am my contractions get really strong and after the gas and air and paracetamol they are still really hurting. Midwife suggests having an epidural. I decline but at 6.30am I decide to have one – thank goodness! It makes it so much more comfortable. At 7am my midwife changes and arrives

with a student. They are both wonderful. I ring John again – he has been awake all night waiting for me to call. The baby’s heart rate is doing well and everyone is happy with how he is doing. The consultant paediatrician comes by to explain how it will work once the baby is here. He is happy with how things are going. My gynaecologist also comes by to check how I am.

 

7/01/2009

Today I am 2 days overdue with baby Hugo. The last few days have been a fucking nightmare. We have managed to get through so much in the last 20 weeks. The diagnosis of Hugo’s heart condition the ups and downs of how we deal with it, how we will manage financially, what happens with work and the pets. All of these things we are able to deal with and cope with and now it feels like everything is falling to pieces.On Monday John was diagnosed with chicken pox. A total disaster. Currently as we stand he is not allowed to either of the hospitals or near the baby once he is born. He was given a chance to be at the delivery but as the days have worn on he has become more and more poorly and now he is a risk to even be there. It is heartbreaking to think that he may well miss the birth of our son. I feel devastated and so does he. He is very angry at the moment as we just can’t believe we have got this far and now this has happened. It felt like every thing was going so well and to plan and now this. You really couldn’t make it up.We are now on tenterhooks waiting for him to recover and see how he goes and just hoping and praying that Hugo decides to stay where he is until his daddy is well enough to be there for him.

I feel like I have been kicked in the stomach – again! It is just like when we found out there was a problem with Hugo. You have such a winded feeling and just don’t know what to do. Because I am helpless to john right now I feel useless and am trying so hard to keep upbeat and not worry or stress but it is so very hard. I can’t even have a hug as he is in so much pain and we don’t want me to touch him. It is so hard to have come this far and now be waiting to see what happens. We are so grateful that Hugo is hanging on in there though. We had a few early labour signs last week and spent the day at the hospital on Friday 2nd as we thought that he was on his way, however he decided to stay put and we are now so very thankful for that as we would had to have infected any other little ones or parents. Also the whole time that little man is staying inside me he is gaining more weight and getting bigger so we keep our fingers crossed that this lasts.

We have estimated from his last scan that he should now be weighing around 7lb 8oz, if he can make another few days then all the better for him. Our last scan went well and we were really pleased with the progress Hugo has made. I am booked into Hinchingbrooke on Monday for them to start me off and if that does not work then they will induce me on Wednesday so hopefully by the end of next week he will arrive here safe and well. We will then be on the next leg of our journey.I have found myself praying so hard that everything goes well for us all in the next few weeks. It is unreal how much you look at things differently to before and I find myself wondering how life will be once he is here with us and how much he will change our lives. I think that John will be re-thinking work once we are back home. The last 2 weeks he has been so ill that I think it has shocked him. His problem is that he has had no time off for so long that I think his body has just collapsed under the strain. It terrifies me how much he pushes himself and I hope that this will be a wakeup call to slow down a bit more.

 

4/01/2009

Hugo has still not arrived!! Very quiet today – plenty of movements but no contractions.

 

3/01/2009

A very uncomfortable day and night.

 

2/01/2009

Bad nights sleep so called midwife. She recommended ringing delivery suite. Rang through and put onto day assessment unit who asked me to come down.Could find no record of expecting us or baby! Arrived at 11.45am BP checked still high but nothing worrying. Urine fine. Had to push about not having my notes. Put onto heart monitor and checked for one hour. Heart beat fairly steady but told to go and walk and eat and come back. Got back at 3.30pm spent another ½ hour on monitor, all ok.

 

29/10/2008

I am currently 34 weeks and 5 days pregnant with just over 5 weeks to go, in fact we have 37 days I believe!! It is suddenly creeping up on us very quickly and I have to say that I have found the last few days very emotional and am starting to feel very apprehensive about everything. It all stated last week when we had a one to one with the midwife who came round for an anti-natal appointment to go through everything we need to know about the labour and when little boy gets here. Up until then I have not thought about my labour at all and have just gone along with it but suddenly I feel slightly nervous!! Something I suppose that I just have to get on with though!!Then this week I have come down with a terrible cold, it has really floored me and made me feel terrible, I have a bad cough and just feel very lousy and have done nothing for the last few days. It is the first time that I have really felt rough in this whole pregnancy. I think that it is because of this that I am feeling so very emotional and worried.

I am also not sleeping at all well at night and find myself laying awake thinking about lots of things which I suppose I should not be worrying so much about at the moment. I seem to think about the birth and how I am going to deal with it all and how I will feel when I first see Hugo and what I will feel when I can’t hold him or be with him immediately after he is born. This is one thing that really eats away at me right now. When I can’t sleep this really worries me and I have had a couple of very tearful days where I feel very touchy and it doesn’t take much to make me cry. John is still being wonderful and holding me together and I think that it is him being so strong that keeps me going. We have everything ready now for when he gets here, bag wise anyway. We both have our bags packed and also Hugo’s bag packed and ready.

We are fairly well organised at home now and have organised our room and the spare room so that when he comes home he can come into our room. I have set up a gift list with John Lewis and we have so far ordered the pram bottom and car seat, I am going to buy the top part of the pram and the cot then we will be all set for when he gets here. We are not having any of it delivered until after he gets here.

I am feeling ok in myself, a little bit down and very large at times but generally good. I have been having some twinges this last few days which worry me a little as we really don’t want him to come early, for one thing we need John to work up to Christmas to earn the money we need to have off in January, and secondly I really want him to be fit and full size and not arrive prematurely. I will do my best to keep him in there until I feel necessary!!Still we are now both very excited about seeing Hugo and we keep wondering what he is going to look like. We had a very detailed scan about 4 weeks ago and we have another this Tuesday so we cant wait for that and to see what he looks like again. At the last scan he weighed 3lb 11oz so we were over the moon with that and he was looking great and he was moving about loads. I think that looking at his profile he looks like Jake as a baby And also very much like his daddy, I just can’t wait to meet him.x

 

24/10/2008

Last Friday we had our second appointment at GOSH. This went really well for us and we were able to meet two mums with their babies. We were also taken on a tour of the children’s ward where the baby will be on and the Cardiac Intensive Care Unit which was really good for us and we were really thankful to be able to have that chance and see how it will be for us. We both left feeling far less scared and although I am quite sure its going to be a bit different when we are down there with our son, I do think that it has helped us remarkably. I found the day very stressful and emotional and ended up crying quite a lot and found myself really tearful that night and the following day. I have found that I am really finding it more and more worrying as the weeks go on and I get closer to the due date.So anyway, we are now at 29 weeks and 4 days and things are really flying.

Last weekend Carol came to see me and we had a great couple of hours having lunch and then bought a few outfits for the baby. It is the first time that I have bought anything for him. We are now looking forward to getting things really well sorted. Next week we are away for a few days and when we get back we are going to finish sorting the office to get ready for the nursery. Di and Anne are coming to stay for a few days and we are going to go and buy the pram and probably the cot and some other things I expect. I really am excited but at the same time very nervous. John and I had a bit of a disagreement yesterday, we were trying to organise the dogs getting booked into kennels and just got wound up with each other, I got myself in a stress and then really upset and said that I wished things were different and that we didn’t have to be doing all this organisation for the baby and then got all emotional. I was just feeling so unhappy that we are going through all of this and it does at times feel very unfair, I wish that we didn’t have to worry about his operation and recovery and its also the stress of having to organise the pets, time off work and money to support us while he is in hospital. I am extremely happy that we are having the baby, but I suppose I wish that it was more easy and straight forward than it is. I know that once we are over it we will look back and realise how we worried more than we probably needed to, but you can’t help wondering what it will be like and I just hope and pray that it will all work out well. I keep on hoping and have found that I am more thankful for what we have right now. We ended up having a very big hug and I had a very big cry and then felt a lot better. I think that at times I am bottling things up a bit and I just need to let all my emotions go and have a good cry.

I am just so thankful that I have John as without him being so amazing I would never get through this. I love him so much and really can’t wait to see our son and see him holding him for the first time, that is why I have waited so long for this moment.

 

11/10/2008

So let’s get up to date. I am currently 27 weeks and 5 days pregnant with our first little baby boy. Baby Hugo James.

7 weeks ago we found out that our little boy had a serious heart condition called Tetraology of Fallot. The pulmonary valve which pumps blood to his heart is blocked and he will need surgery once he is born. He also has 3 holes in his heart.The day we found out was terrible. After having my 20 week scan at Hinchingbrooke Hospital it was detected that there was a problem with his heart and we were referred to Great Ormond Street Hospital the following Friday (we had our scan on the Tuesday morning).The doctors and nurses at GOSH were fantastic and extremely helpful in giving us information, however on diagnosis we were offered three options. There was a greater risk that the baby could have a genetic disorder such as Di-George syndrome or Down’s syndrome. We could go ahead with my pregnancy as planned. We could have an amniocentesis test to see the outcome of this and then decided if we wanted to continue, or our last option was that if we felt dealing with a heart problem was too much we could end the pregnancy straight away.After leaving GOSH we went for something to eat with Di and Anne who had come to the Hospital to support us and although we talked about things we decided to wait until we got home before making any decisions. Once John and I were alone we both talked and immediately decided to go ahead with the amnio test. If our baby had a heart problem and no other medical condition then we both already felt that we had got this far and wanted to keep him and work things through.

As soon as we got back, we managed to contact Hinchingbrooke whoo got us an appointment for first thing on the Tuesday morning (it was a bank holiday weekend!) We spent a very long weekend in various emotions and spoke with many people, but nothing anyone said could change our minds on what we wanted to do. My appointment was for 8.30am Tuesday morning and although it was not a nice procedure I was glad it was done and over. Unbelievably we had our test results back by the following evening for the downs syndrome which were clear and the Di-George syndrome came back two days later also clear. The relief was amazing and we have been thankful that there is no other problem with our baby. John and I have taken this news really well and I am surprised by both of us in how we have dealt with it so far. John has been so very supportive of me and has been wonderful to me. I hope that he feels I have been the same with him. It has bought us closer together and we are working each day through and just hoping for the best. Today I have felt tearful, I think that this is because we are ever closer to him being born. When we first found out it was a massive shock but we managed to get through it and move on. Now I feel that all of a sudden it is creeping up on us fast and I have to admit that I am suddenly very worried about how it will be after Hugo is born.

This Friday we have our follow up appointment at GOSH and we are hoping to get some more answers to questions and just find out where we are going from here on in. I will be glad to get this appointment done and out of the way so we know where we will be going come early January when Hugo is born.

 

29/08/2008

Our test result came back negative on downs syndrome – thank goodness! The relief is incredible. We still have a wait for the 22q test but we are feeling slightly more positive than earlier in the week. This week is so weird, it has felt like at times I am banging my head against a wall. I still can’t believe that we are going through all of this. Even if all goes our way on the test results we are still facing a huge battle. I have spent the last few days doing nothing – which is boring but nice. I am also no longer working which is pretty good!!! And John is being wonderful. He is really keeping me going – both of us going.Other people are also being great. I love this baby so much already I could never imagine not having him. I just pray that the rest of the pregnancy goes smoothly and we can relax and enjoy it a bit.

 

27/08/2008

Week 21. What a week!!! Friday we were at GOSH. Our little baby boy has a very serious heart condition called Tetralogy of Fallot. He is in a very serious danger when he is born, and there is a chance of him being downs syndrome or having a genetic disorder called Di-George Syndrome 22q. Today I have had an amniocentesis test to find out if our baby has any of the disorders. The last seven days and in particular the last five days have been awful. The emotion and turmoil we are going through is indescribable and I cant believe that we are going through this now. Depending on the result of the test then we may have to decide to end the pregnancy. I hope from the bottom of my heart that the test comes back negative.

 

20/08/2008

Week 20. Yesterday we had our 20 week scan, Hugo is a boy!!! But he has a problem with his heart – Friday we are having to go to Great Ormond street Hospital to see a specialist, it’s hard. You can’t help but worry.

 

5/07/2008

19 weeks and 3 days. Starting to feel very excited! Really starting to feel pregnant now. I can feel Hugo moving which is wicked and such an amazing feeling! I love it. I keep dreaming about a boy but we are having a scan on Tuesday – so we can maybe find out then? I haven’t yet decided!

 

12/06/2008

Week 11, today we had our first scan. Fantastic, saw baby for first time and it made me cry. Little acorn was bobbing about, John was really excited too!