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 hugos 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.
Sunday 11th January 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.Monday 12th January 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 opthalmologist 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. 13th January 2009.
Hugo had a comfy night and was kept nice and calm. In light of yesterdays 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 ophalmologist 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 amniocentisis was clear that Hugo would only suffer the heart problems.
14th January
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 wee pleased with how the shunt had gone. Hugo was very sedated and fast asleep.
15th January
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.
16th January.
Hugo had another comfortable day. His nurse has got him very settled and he is really relaxed.
17th January
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.
18th January
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.
19th January 2009
John arrived on the ward at 7.15am. On arrival he noticed that Hugo was not looking well, his head 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, nurse’s 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.
20th January
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.
21st January
Hugo had a good night, was told that today’s plan is to bring ventilation down, see the opthalmologist, possibly do a PH test and feed him a small amount of feed. The opthalmologist 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.
22nd January
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.
23rd January
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 that it 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.
24th January
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.
25th January 09.
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.
26th January 09.
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.
27th January 09
Hugo has an infection in his central line.
28th January 09.
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.
29th January 09.
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.
30th January 09.
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.
31st January 09.
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!
1st February 09.
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.
2nd February 09.
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.
3rd February 09.
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.
4th February 09.
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.
5th February 09.
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.
6th February 09.
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.
7th February 09.
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.
8th February 09.
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.
9th February 09.
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.
10th February 09.
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.
11th February 09.
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. reposioning. He continued to recess and the reg 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 highs so a blood culture has been taken. If he starts to go downhill anymore he may have to be fully incubated.
12/02/09
Hugo had a settled night, he did reses slightly but remaind fairly calm. during the morning Hugo became very unsettled and went very pale, his temp was very high and he was resesing more. His sats also became quite low in the mid 70's.
One of the Doctors came over and had a look at him, and after doing a a blood gas decided to give him a blood transfusion as his HB and oxygen levels in the blood were low, he was also very pale.
Not long after this he became very mottled and distressed, he desaturated quite rapidly and after a few more minutes they decided that he needed to be ventilated immediately. They also decided that they are going to change his line while he is under and paralized.
By now Hugo was very distressed and I began to feel very upset seeing him so upset. John was feeling unwell and had gone back to the accomodation for a sleep so I was alone with him and then had to leave when they incubated him. I rang John as soon as I got out and he rushed straight over to me. It took the Doctors an hour or so to get him sorted and when we came back there was a procedure on so we couldn't get back onto the ward. When we got back in Hugo looked a much better colour, the vent tube was in his mouth which he seemed happy with, the Doctors want to wait and see if he has an infection.
13/02/09
Today has been an unusual day. Were relieved this morning to find one of the regular nurse’s 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.
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.
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.
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.
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. His Dr 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.
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.
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.
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 stuffily 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 needed 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.
6 weeks since I left home! What a journey so far. Hugo has had a fairly steady, comfortable day. He is very stuffily 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 needed 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.
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.
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.
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.
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.
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.
24/02/09
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.
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 cannulas 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.
Hugo had a good night and slept well. He is having the cannula 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.
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.
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.
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.
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.
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.
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.
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 (Olivia's mummy) 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.
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.
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.
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.
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.
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.
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.
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.
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.
14/03/09
My first morning waking up with my darling baby boy. Hugo slept like an 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.
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.
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.
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.19/03/09
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.
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? Thankfully Claudine was here for the afternoon/evening so I had some company.
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.
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.
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. John is back and 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.
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.
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 vecuronium 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.
27/03/09
Hugo has remained stable overnight; he is still paralyzed and is 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 wont 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.
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 desaturation 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.
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. We 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 cannula, 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 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.
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 cannula 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.
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.
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 cannula 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.
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.
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.
04/04/09
Hugo had a little smile 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.
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.
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 anaesthetist 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 cannula. 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 Vecuronium 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.
07/04/09
Hugo remained stable overnight. After he was cooled his temperature then became too cold. When we arrived this morning he was sedated and paralyzed. He is passing urine but not enough so has been put on furosomide IV. He has already had a blood transfusion as his HB was low. He has had an ECHO which looks good. The doctors are all pleased with him; one of the consultants came to have a chat this afternoon. His urine output is slow so he could still need dialysis, but we are going to wait and see, he dropped his blood pressure early afternoon, because he has had lots of fluid he has got a bit overloaded and become quite warm. He needed to be given some more adrenalin. Hugo has had a few crackles on his chest and his lungs are a bit wet. He has needed blood again this evening and is still not passing urine well.
Fantastic news for us today in that Tom has finally left great Ormond Street; he has gone back to his local. I was so sad to see Kris leave - I have lost a wonderful friend who was a daily support, but we are so happy to see Tom leave here.
08/04/09
Hugo has remained ok overnight. He is still not weeing and his lungs are still wet. He has had a chest x-ray and he has a small pneumothorax 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 vecuroinum 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 wee - 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.
09/04/09
Hugo dropped his sats overnight. He has had an x-ray which has shown his pneumothorax 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.
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.
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 LFT’s 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.
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 pneumothorax 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.
13/04/09
Hugo has been very unsettled during the early hours of the morning; he has lost a cannula in his head and has a lot of secretions. He was given another x-ray which showed his pneumothorax 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.
14/04/09
Hugo has had his line inserted today. He has been given a Picc-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 pneumohorax 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
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.
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.
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!!!
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 chilled out soon and loved his cuddle. Early afternoon with Hugo’s nurse, I 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°c 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.
19/04/09
Hugo has slept well overnight although he was still quite warm. He had a temperature of 38°c 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°c 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.
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.
21/04/09
John has gone home this morning for a few hours. When I got into CICU 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.
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.
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.
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.
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 respiratory rate and when he is unsettled seems to be recessing more.
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.
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.
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.
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°c. 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 in-case 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.
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.
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.
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 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 cannula 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.
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.
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 now 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.
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.
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.
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.
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.
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.
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.
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.
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 123days 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!
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.
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?
19/05/2009
Hugo’s diuretics halved.
20/05/2009
Hugo has gained 200g. Considering still on monogen milk seems to be possible fluid retention?
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.
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!
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!!!!
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.
27/05/2009
After 139 days in hospital we have bought Hugo home.
