Sat 17/07: John didn’t work last night so it was nice to have a Friday with all of us at home! Hugo went down to sleep around 8pm and slept until 6.30am, I gave him his feed and he then went back to sleep until just after 8am!!
Dad and Karen popped into see us today which was lovely, Hugo was showing off with his toys and I think impressing them both!
Sun 18/7: Hugo woke at 5am and I got his feed set up and on. Being in the house alone is always more difficult. It doesn’t really bother me, but there is always the worry of something happening and me being on my own with Hugo. John got back in around 6ish and took Hugo downstairs so I could have an extra hours sleep - very much needed!
Had an easy day, popped out for a drive in the car just to get out of the house, still daren’t go anywhere crowded. Hugo in a good mood and very chilled out today.
Mon 20/7: John’s birthday. Difficult start, Hugo had his feed at 6am and did not tolerate it, he had a very big vomit and we took a while to suction him and then settle him. It took some time before he calmed down, but he did eventually settle. Once we got him sorted we took him downstairs and made a big fuss of John’s birthday - Hugo even handed his Daddy his birthday card!
Hugo tolerated the rest of the days feeds and had no further vomits so hoped it was a one off? Went down to John Lewis to pick him up some new bits, ended up buying too many things for him!!
Tues 21/7: Really bad start, another vomit after only 12mls of first feed. After calming down we decided to get up ( 5am! ) and sit with Hugo while he continued his feed, just in case he had any more problems. Got half way through and he vomited again. Became extremely distressed and we struggled to get him to stay still while we suctioned him, so he became more unsettled and it took ages to calm him down again. Eventually just fell asleep exhausted - really unsettling for us, its dreadful being the bad guy!
Once he had woken he was much more himself and had no more problems for the rest of the day.
Wed 22/7: Good start, no problems with first feed and started the morning well. Had physiotherapy at 9.30am very impressed with him and what he is doing. Thinks that his rolling onto his tummy is coming on very well and feels that he is strengthening well. Looks like we will have to wait now until sept before seeing her again.
Hugo had a great morning and afternoon but after his evening feed he had another vomit. It seems to be secretion related and again it took a while to calm him down. We are starting to worry that he may have a cold.?? Tough few days on the poor love!
Thurs 23/07: Much better day, no sickness and a perky happy Hugo - phew! Found out today that he loves us clapping for him, he keeps laughing when we do it and then claps his hands together, exciting stuff!! Must be exhausted after last few days as he was asleep by 6.30pm.
Fri 24/07: finally managed to up Hugo’s feeds to 120mls per hour. He is tolerating it well so far and we have not had any more sickness in the past 48 hours. We have just bought a high chair for him and he is sort of enjoying sitting in it, although you have to really amuse him while he is in it. We have managed around half an hour tops before he is yelling to get out. Hugo’s problem is that he has spent so many months laying in a bed that he finds sitting up quite difficult still and does breath a lot harder and has been wheezing a lot more than usual. The extra feed seems to be giving him more energy and he has been rolling today. We are really trying to get him onto his tummy as much as possible as he has great head control with it. Also had hand clapping today and big giggles - very amusing!!
Sat 25/Sun 26/07: Easy couple of days, John working so taking it steady, had a long walk sat am. Hugo still tolerating the extra feeds, lots of babbling so he is definitely gaining something from all those calories. Started to become snuffled Sun, got few more secretions than has had over last few days and wheezing quite a lot.
Mon 27/07: Hugo not his normal self today. Went with John to his Physio (John having big problems with his back!) and Hugo and I sat in the car. Hugo got really unsettled and ended up having to sit holding him for some time. Would not go back into his car seat. Lots of mouth secretions and needing more suctioning than usual. Wondering if he has picked something up?
Tuesday 28/07: Hugo bit brighter, still having lots of secretions especially early morning. Is wheezing lots more and has a slight rash on his back although it looks to me like heat rash.
Wednesday 29/7: I had an appt today at Hinchingbrooke so we all went and afterwards did some visiting. This is the first time we have all gone out for a few weeks. We are being so careful with Hugo and not risking him picking anything up - but goodness it was nice to get out and see some friendly faces. We popped into Nana and Grandad’s and then into Dad’s work. Hugo was on great form and a happy bunny although he is wheezing a lot today and has lots of nasal secretions as well as mouth secretions. We are going to see how he is tomorrow and then perhaps speak to his peadiatrician at Hinchingbrooke.
Delivery of medical supplies. Still having problems with syringes. Still not getting enough to last the week.
Thursday 30/7: Today started ok, Hugo very snuffled and lots of secretions. Gave him a dose of paractemol mid morning as slightly unsettled but he had a good sleep and seemed to perk up afterwards. One of the nursery nurse’s came up from the GP’s to weigh him. His weight has gone up 600g to 6.14kg. Quite a big jump in 10 days. He has again stopped his diuretics and we are wondering if he is not coping without them the same as before. He is very wheezy again and we also wonder if this is down to such a big weight gain, so I rang and spoke to Hugo’s Doctor who asked us to bring straight down. Hugo had just finished his feed and was struggling with lots of mouth secretions. He had had a small vomit just after the feed but then bought up a lot of thick secretions and started to vomit again. John and I tried to suction him, but he continued to vomit and ended up with very thick secretions coming out of both his mouth and nose. Hugo was starting to become very distressed and had gone really pale. We couldn’t suction his airway quick enough and he was starting to struggle with his breaths. We both started to panic a little. We managed to clear him but he went straight off to sleep. We hooked him up to his monitor and his sats and heart rate were ok so we gave him ten minutes before putting him into the car. We had just got down the road when he started to gag again so I got john to pull over so I could suction him. Turned the suction pump on and it wouldn’t work. Buggar. Raced back home and picked up back up suction and then raced down to hospital. His Doctor realised that we were late arriving and was waiting for us, she checked him over. His chest was very rattley so she sent us straight down to X-ray. His x-ray was fairly clear, few streaks but not as bad as she had expected. She did swabs, is quite sure its not swine flu but a viral infection. He also had a rash all over his back and neck. She has started antibiotics and we are having to monitor him over weekend. Very relived that he didn’t need admitting. By the time we left he had really perked up and was giving his flirty eyes!! We drove home thanking our lucky stars that our ‘dry run’ was not a real emergency, although both admitted that next time we could do with being slightly more organised!! Unfortunately there will be a next time but we just need to be a bit better prepared. John managed to sort out suctioning unit so now working again - phew!
Had his feed at 7pm but became really unsettled again and we decided to stop it partway through as were worried he would start vomiting again. Took a while to settle but he fell asleep around 7.30pm. We then started to put away all the bags (4) and equipment that we had just dumped in the door on returning from the hospital - thank goodness we keep overnight stuff ready!!
Friday 31/7: Hugo slept really well overnight. We have reduced his feed back to 100mls. The problems with Hugo is that because he has nothing orally we never know if he is not up to feeding. A bottle fed baby would refuse or stop feeding if they didn’t want anymore or have had enough. Hugo cant do this. So we spoke to his Doctor about bringing down the feeds for a couple of days, just to make sure he is getting enough to satisfy him but not push him too much. His antibiotics have kicked in (got a very upset tummy) so that’s a good thing, and I have been giving him doses of paracetamol as he is grizzly. He is not himself today and extremely pale and dark around the eyes - looks surprisingly like John when he feels ill!!
But all in all a better day, he is not quite right but doing ok considering. Has slept a lot all day but we are getting our smiles so all is not too bad in Hugo’s world!!
Delivery of medical supplies - still not right, sent disposable syringes and told me to re-use them???? I give up, will just have to continue buying our own!
Rang community nurse as still awaiting yanker suckers for suctioning. No one available to bring them out to me so told me I had to go and collect them. I explained Hugo ill and I cant drive with him. Will not be able to get into Peterborough until Monday now - ridiculous! Also need suctioning equipment for the suction unit, but still not been able to get any. Currently having to wash out and reuse all tubing find it very annoying that we have to keep asking and keep being told that we need to reuse stuff, so much for using sterile equipment!!
Weekend 1st/2nd August: Hugo is much brighter now the antibiotics have kicked in. He had a more settled weekend. Slept a lot and has tolerated all of his feeds again, although his volume is still at 100mls.
3/8: Had our first big visit out today at Di and Anne’s in Aylesbury. Long drive took us almost 3 hours to get there, but Hugo was as good as gold in the car and on arrival we were all very spoilt and had a lovely day. Did find it a challenge with all of Hugo’s stuff. Car loaded with feeds, feed pump, feeding sets and syringes, bag for medication, flushes and gastrostomy bits. Changing bag, spare clothes and nappies. BOTH suctioning units and box of catheters. (not taking any chances this time!) wasn’t any room for John or me!!! Had a great day and really relaxed. Coming home, Hugo got very sweaty, he goes very pale and gets cold and clammy. When we got home he was soaked through, we had already put him in a baby grow so we had to change him. We put him in his cot and hooked him up to his heart rate monitor. HR was fine but Sat’s were sitting at 93%. We checked his probe was on properly and it was so we sat with him for a time, they stayed like this for about 10 minutes before going up to 98%.
4/8: John got up this morning and decided that he was not going to work ( not sure what kind of miracle happened overnight?) so we had our first family day out just the 3 of us. Great day, went to the Norfolk coast for the day, very tiring but good fun and enjoyed taking Hugo out for a change.
5/8: Very tired after two days out, spent the day at home, not doing much except playing with Hugo. He is full of energy today and very excitable. He actually sat up for about 30 seconds on his own!
6/8: ENT appointment at GOSH. Good report, very impressed with Hugo’s progress and extremely pleased that he doesn’t need any extra help with his breathing over than the suctioning. Is referring him to GOSH SALT team again for a video fluoroscopy to see whether it is safe for him to swallow and not aspirate into his lungs. This is great news, as I have been pushing our local SALT team to review him since we left hospital. After our appointment we met up with one of Hugo’s lead nurse’s from his time on CICU. We then went up to CICU to see the staff there and let them see Hugo. It was a very lovely half an hour. Hugo was ‘stolen’ from us by one of the lead consultants who took him round the unit showing him off to all. It was a very proud moment. The staff could not believe how well he is looking and were all very pleased to see him. It was a very lovely day and very good to see so many people who remain fondly in our hearts.
7/8: All very tired today - long week, and taken its toll! Had an easy day.
8/8: Hugo has today been good and very chirpy, but has been really sweaty today. Seems to get very tired sweats a lot and then falls fast asleep. It is a really cold sweat and he is icy to touch.
9/8: During his feeds today, Hugo has continued to have regular sweating. Starting to wonder if there is more to it?? He is fine in himself and very content. Once he was asleep and we put him to bed he again got really sweaty, so much we had to change him into a clean baby grow. He overnight also became so sweaty that we again thought we might have to change him, but it wasn’t as bad as earlier in the evening.
10/8: Hospital for audiology appt. New ear mould fitting for his hearing aid. Found out his hearing aid battery was flat so aid not working!!!
11/8: 9am Appt with SALT. Just going to monitor Hugo until referral comes from GOSH for video fluoroscopy. Very pleased with the sounds he is making and feels he is at appropriate level for his age. Appt at Hinchingbrooke with Hugo’s Peaditricans. Had ECHO which showed there to be a slight increase in the enlargement of his right ventricle. Hugo got really upset during the ECHO ( a first for him) and cried very loudly for about 2 minutes. He became really sweaty and then fell asleep in my arms. We said that this was normal for him. Both doctors were looking at us a bit perplexed! Apparently this is not normal?? (Hugo is our normal so we didn’t really know any different) and a bit worrying. Hugo’s Doctor believes his heart is not coping very efficiently and these sweats are because it is struggling. She wants us to restart diuretics at a twice daily dose for two days and then once daily for three weeks until cardiologist from GOSH comes to HB on 2nd Sept. She has also put Hugo in for a 24hr ECG monitor. He is dropping his heart rate fairly low at night when he is in a deep sleep (can dip to around 75bpm, but generally sits around 80-90bpm) and she wants to see if he is having any other irregularities.
Big blow, we were not prepared for that, had got so used to Hugo doing well in all other aspects that we had not felt any need to worry too much about his cardiac problems, especially as GOSH were so pleased with his progress when we were there last.
12/8: Noticed that sweats have reduced slightly, is it diuretics??
13/8: Had 3rd set of Immunisations today, got very upset as did we, Nurses didn’t wash their hands between doing each baby - bit annoyed. We are going out of our way to be careful of Hugo catching any bugs/colds etc and the bloody nurses don’t know how to use basic hygiene. We didn’t realise until after they had done Hugo. Grrr very cross.
14/8: Hugo very unsettled overnight. heart rate of 130bpm very hot had to give paracetamol. Think it’s a reaction to jabs. Very grizzly today. Have halved diuretics and sweats started to get more regular again. Also got very bad upset tummy.
15/16/8: Been fairly settled over weekend, still sweating and bad tummy. Had a small vomit Saturday and needed suctioning, then fell asleep, but managed to overcome it well. Has lots of secretions on his chest and requiring more suctioning in the last few days.
17/8: Rang and spoke to Paeditrican today to mention that he has started sweating again. Restarted twice daily dose again. Hugo very hyperactive tonight - very funny!! Had small vomit tonight, but managed to clear himself without much suctioning which is good.
18/8: 24hr ECG Tape fitted, took Hugo into children’s unit for check up. Had blood taken to check Hugo’s electrolytes and parathyroid hormone, also took stool samples as still got very upset tummy. All bloods came back good, except parathyroid hormone could not get a result. Tested negative for both viral and bacterial infection which is good. Had another vomit tonight, got very upset and needed a bit of suctioning and then fell asleep very quickly, also got very sweaty!
19/8: ECG tape removed and taken back. Very energetic think the extra dose of diuretics working well. Still sweating but not as profusely as before.
20/8: Good day, Hugo very settled, we all went out with John to get his stock for W/E……..in the van!! Very interesting and fun, Hugo thought it was great as he could see out of the window.
21/8: Hugo been off colour today, very grizzly and just not himself, given him paracetamol and just lots of cuddles. Very funny tonight, John decided (typical man) to put on his balaclava and see what Hugo would make of him ( I obviously thought it was a bad idea, scaring the little man etc…) anyway to my horror, Hugo thought it was the funniest thing????? He was giggling away, I have born a child with John’s sense of humour, OH MY GOODNESS, any suggestions!!!!
Its been a hard couple of weeks and both John and I are knackered. I am finding some days really tiring, with all of his meds, feeds, suctioning. Because Hugo wakes at 5am most mornings for his first feed I’m awake from then on, I’m not getting any catch up sleep during the day ( what mum does, she is a liar if she tells you otherwise!!!) so I’m starting to wilt a bit.
Still the boy is amazing, keeping us going and completely blowing us away with his determination, he is so happy and is now rolling everywhere, standing supported and trying to sit too.
After a couple of very worrying weeks we saw one of the cardiologists from Great Ormond Street on Wednesday at Hinchingbrooke. He is very pleased with Hugo and how he is doing. Apparently his heart is working as it should be and there is a very tiny slight increase in his regurgitation but that is to be expected. Everything is working as it should and he is very happy with Hugo’s progress.
This is such good news for us and a great relief after a very worrying and stressful couple of weeks.
Obviously we were worried as he is showing symptoms of something? One thing it could be is slight aspirations into his lungs.
Basically because he cannot swallow properly and has the bulbar palsy he could be having small aspirations of saliva into his lungs. This is why the diuretics have helped - by drying out excess fluid from his lungs. At the moment Hugo is not showing any signs of becoming ill from aspirating, but we have been told now that under no circumstances must he be given anything orally (which we don’t do anyway) we just have to keep an eye on him that he does not come down with any chest infections as the summer turns into autumn and keep a close check on him.
So we are very relieved, we do not now need to see the GOSH Cardiologist for 8 months and do not need to see our paediatrician for 8 weeks - so we are very closely coming to the end of a long run of hospital runs and appointments. We are fully booked until the end of September and then have nothing as of yet for October!
This week has been one of our best. On Friday Di and Anne came to visit with Michael. He has not met Hugo yet and was so good with him, Hugo loved him. On Sunday we spent the day at my Dad’s with some of the family and it was so nice, my niece and nephew were there too and loved being with Hugo and really fussed over him. Bank holiday Monday we had a visit from Matt, Keeley and Betty who we meet while in GOSH. Their daughter Betty was in having heart surgery 4 weeks after we arrived. She has made a fantastic recovery and is doing so very well. She is an amazing, beautiful little girl and Hugo was very taken by her (as were we!!) It was wonderful to see them all and Hugo really benefited from spending time with a child of his own age - something he has not yet done. Tuesday my friend Carla came over with Molly who is 11 months, again Hugo was highly impressed by his lady friend and we now think that Hugo really is the little flirt that we thought of him!!
It has been so nice to have a week of normality - makes a very pleasant change. Hugo is full of beans at the moment and becoming very loud, he is babbling lots and really making good sounds. He now says Da Da very clearly and uses it well (very unfair John gets first word) He is also desperate to stand so we are buying a baby bouncer this week. He really is a little star.
Fri 4/09 booked our holiday today - very excited. 2nd day in a row that Hugo not required any suctioning, quite good progress.
Sat 5/09 Hugo is very loud today, babbling lots and really full of beans. He has really had me laughing today, spent most of the afternoon taking photos. Terry and Alison bought Nan over and she had her first hold of him - very lovely moment. Not had any suctioning today???!!
Sun 6/09 Easy, relaxed day today, just what you need on a Sunday, especially after John having such a busy hard W/E. Hugo has had a really upset tummy for a few days now, not sure why, his tummy has not been settled for a few weeks, but just got a bit worse? Had to use suction today - but not bad going to have 3 days of no use.
Mon 7/09 busy day, physiotherapist came am, very pleased with Hugo, really pleased with his motor development and feels he is catching up to his age group very well. Feels his head control has improved and is really pleased that he is trying to stand. Still not able to sit unaided but he is trying very hard.
Pm saw Mark, teacher of the deaf. He will be seeing Hugo on a regular basis to assess his needs and requirements. Again he is pleased with how is doing, finds it amusing that he is so loud, but apparently this is not unusual for children who are hearing impaired.
Then just as we thought we had already had a busy enough day, my midwife rang Apparently can’t find a record of Hugo having a newborn screening blood test?? I know he had one as had seen it in his notes at GOSH. But no record anywhere so can they do another, so over she comes and does a heel prick to get blood. Hugo actually laughed when she pricked his heel!! Odd child! He was so busy smiling and laughing at her I think that he had no idea what she was doing - little flirt!
Tues 8/09 Hugo still got bad tummy. Another busy morning. Visual impairment teacher has been to see him. Bought lots of learning toys, although Hugo has most of what she bought! Then got out some different coloured lights and torches and waved them around. He was mesmerised by them. His teacher was very impressed by this and feels that he is really making good responses. Midwife rang, can I tell them how many blood transfusions Hugo has had for the blood test???? No idea off top of my head, lots, then she said she just needs date of last one - lucky I write all of this down in my diary.
Wed 9/09 Bought Hugo a baby bouncer yesterday and he is loving it.(thank you Terry and Alison who are paying for it) Gets very animated especially when we have music on too. Hugo has improved slightly on feeds and we have increased the volume very slightly which he is tolerating, however he still has very upset tummy and today he was passing blood. I rang hinchingbrooke and spoke to his Doctor she feels that if he is well and not showing any pain then don’t need to bring him down, but we are at hospital tomorrow for ophthalmology appointment so are taking him in for check up then.
Thurs 10/09 Really busy day, left for hosp at 1pm, got into children’s clinic, which was busy so had to leave for Opthalmology appointment. this took forever (always running late!) had first appt where they checked his responses. He is showing improvement in the right eye, but not much response from the left eye. She put a patch over each eye to see his reaction. When it went over the left eye Hugo didn’t even flinch however when she put it over the right eye he got really distressed and started to cry, obviously it had completely blocked the vision. Then had to have drops to dilate the pupil and we then had to wait about 40 mins to see the consultant.
I then went to set up his feed - and realised that I had bought everything except feeding containers - buggar, rang through to children’s ward and luckily they had a spare one so then had to run from other building back to main building up to children’s ward and back again to set his feed up. Luckily Hugo had fallen asleep, but had got very upset before falling asleep. Very lucky we were at hospital or I would have had to drive home to get him one. Need to make sure that we perhaps carry an emergency feed bag in the car to save it happening again. Feed ended up an hour late.
We finally got back into see Hugo’s consultant who was pleased with Hugo’s progress. As he is bigger now we can see what responses he is making much more easily. It is obvious now that he has poor if any vision in left eye. She feels that he will possibly know the difference between dark and light but that is possibly it. She is hopeful that his right eye has moderate vision and hopes that that will continue. She is pleased with how he is responding though. Started to gag as we left, think had too much handling while feed running.
Left opthalmology, back over to children’s unit. While waiting Hugo had a small vomit - argh! Managed to sort him out quite quickly but panicked the receptionist with our fussing and suctioning. Got straight in thankfully. Gave her Hugo’s poo samples (nice) she is sending two, one for a bacterial virus and one for viral. She had a good check over and is happy with him, felt his tummy which is fine and liver which is not enlarged. Listened to his chest which was clear, so not sure what is causing it.
Finally left hospital at 5.40pm so didn’t get home till just after 6pm, very long day, both knackered, Hugo went to sleep with no problems, he was full of beans all the way home, not sure how he does it.
Fri 11/09 Easy day, after a busy one yesterday, just took Hugo out for a walk in his buggy and taking it easy.
Sat 12/09 Really nice weather day today, but John has shut the car in the garage and I can’t get buggy out to take Hugo for a walk…Grrr. Not amused, wanted to have a nice relaxing walk in the sunshine. Another easy day of not doing much. Hugo still got bad tummy, wondering when it might stop, as poor love is none stop pooing!
Sun 13/09 Hugo has been quite unsettled today. Took him out to the Landrover show (John was going and I needed to get out of the house so agreed to go, was bored after 10 mins but humoured my husband anyway) Hugo was not quite right when walking round and had a very long sleep which is unlike him during the day and in his buggy. Got home and he settled but was quite pale.
Had Dad and Karen over for dinner, they arrived as I was bathing Hugo and he was seeming a bit brighter but just as I served up dinner he became inconsolable, very unlike him and the worst we have ever seen him, bit worried as he was drawing his legs up and seemed in a lot of discomfort. He was part way through a feed so we stopped it. He then dropped off to sleep and settled. We decided to bring his volume down slightly during the next feed and see how he went. Tolerated the next feed fine, but was asleep.
Mon 14/09 Hugo slept until 6.50am. I put his feed straight on. He got to around 89mls and again became very distressed and unsettled, went very pale and sweaty. So stopped feed. He then fell asleep exhausted so let him rest. Decided to give him a dose of paracetamol.
Rang the Doctor at 9am and spoke with her. She recommends putting him to 2 hourly feeds for the day and dropping volume and see how he goes. Still terrible diarrhoea and not smelly too nice (sorry people) she thinks he may have had an infection that is now clearing up?? Both sample results were negative. Not convinced personally.
Very long day, two hourly feeds is hard work with a feed pump. He has 65mls given over about 40 mins. Takes 5-10 mins to get feed pump set up, then feed him, then have to disconnect it and flush it off. So gave a feed at 11am, it finishes at 11.40am, then next feed due at 1pm. And so on. Bloody knackered by the end of the day. Last few feeds he tolerated well so decided to give him his 10pm feed as a full feed of 100mls. didn’t fancy feeding him every two hours overnight - thankfully he tolerated it well and slept through fine.
Tues 15/09 Hugo much better today, woke well and a bit more perkier than yesterday. Much happier, so obviously feeling better. Had one dose of paracetamol but all in all much better.
We have to turn his Gastrostomy tube once a week and push it back into his tummy to make sure it has not stuck into position. However when trying to do this this afternoon it was stuck solid and would not budge, had to call hospital and then community nurse who is coming in the morning to see what’s up.
I’m not sure that you have all heard us talk of Olivia. She was Hugo’s bed neighbour on many occasions during our time in GOSH. I believe some of you even had the wonderful chance of meeting her when visiting us.
Very sadly we heard the news today that Olivia passed away this morning.
We are so devastated by this news, I have come to know Sue, Olivia’s mum well. We spent many hours chatting while at GOSH and have kept in contact since coming home.
Our thoughts are with all of Olivia’s family at such a dreadful time and we can’t help wishing there was something we could do to help them all. It has made John and I realise how lucky we are to be home with Hugo and that he is doing so well.
The emotions I am feeling are very raw, we know how it feels to be in a dreadful situation watching your child very poorly and not knowing what the future holds, but we were lucky to always have hope.
Wed 16/09 Hugo is much more improved than previous days and has been really full of beans today. We have managed to increase his feeds again and he is back up to 115mls, not quite as much as before but a good start.
Community nurse came at about 11am, managed to turn and move the G tube, needed a bit of force and some Vaseline. Not sure why it stuck, but its sorted now - phew.
Finally got hold of the Speech and language therapist. She is now coming a week Friday. GOSH won’t see him for a video fluoroscopy until he is showing that he can be tempted by food.
I have been giving him small tastes of food, literally just a tiny touch on a spoon and he is taking it ok and not gagging (but it is a touch) he seems very interested in the food and really enjoys putting the spoon in his mouth, so who knows, see what she thinks on Friday.
He has been very smiley today and I have spent a lot of my day cuddling him - I think I will be doing this for many months to come (not that I don’t already spend lots of time cuddling him!)
Reflecting a lot today on yesterdays sad news and thinking often of Sue and Nick and Daniel.
Thurs 17/09 Heard the wonderful news today that Nick and Sue had a baby boy this morning - they have named him Luke.
Hugo is intent on trying to crawl today, he is now onto his knees and rocking slightly on his elbows, has been at it all morning - cheeky monkey!
John and I have been through a lot this year, we have gone through emotions that are indescribable. But hearing about Olivia has just made us remember that not everyone is as lucky as us. I can’t imagine the suffering that Olivia’s family must be going through. I try to imagine my worst day during our time in GOSH, but know that it comes no way near their experience.
22/9 Very long day at GOSH, Hugo awake at 5.30am, left for GOSH at 10am. Had to stop twice on route for Hugo to have nappy changes and to sort out his feed. Its really hard driving with it running. He is not really supposed to have it on the go while driving in case of vomit problems, but can you imagine if we were to not feed him while going on journeys!! Got to GOSH at 12.30pm so good journey in. First stop was the gastro nurse to check his g-tube. All is ok with it and she is happy that there are no problems with it keep getting stuck. Next appt was SALT, talked about how Hugo has been having tasting’s of food and she has offered us a place next tues for video swallow test - woo woo.
Next appt was Ophthalmology - bit confusing - again, saw a consultant who tells us that Hugo has perfect vision in his right eye. We know this is totally untrue. He has a Coloboma in the right eye which does impair his vision. And we have seen many consultants who have all said that although Hugo does have vision, we cannot tell how much at such a young age, but it is definitely not perfect. He then started telling us that he feels Hugo would benefit from a cosmetic procedure to put in a false left eye to make it look the same size as the right eye. We are not too happy with this idea, Hugo would need to have a general anaesthetic to make the mould and would need lots of appointments for fitting etcs, and personally we can’t see what he is going to gain from it apart from making his eyes look more similar in size. We also feel that he is too young and has more important health issues to be concentrating on.
Next appt was Genetics just to go over Hugo’s CHARGE diagnosis and discuss what tests are available to us if we choose to have another baby. Current options are a 11 week
Chorionic villus sampling (CVS) test. This is a diagnostic test, which means that it can tell you with almost complete certainty whether or not your baby has got a particular condition. Our other options are amniocentesis at 15 weeks and detailed ultrasound scans. As it stands we have a 1 in 100 chance of having another child with CHARGE so it is not particularly high. It is just going to be something we will have to think about when the time comes for baby no 2!!
So left GOSH at about 6pm, just in time to hit London traffic - great! Finally got home at about 8.45pm. Thankfully Hugo had fallen asleep on the way home so we just got him changed and straight into bed, neither of us had eaten so we had some toast and went straight to bed.
23/9 Hugo very unsettled today, very grizzly, think he is probably tired. No temperature and tolerating feed so not too worried and given paracetamol. Has been having slightly more sweaty episodes again, will see how he goes.
24/9 Still having sweats, I’m feeling unwell today and think Hugo may also have something brewing.
25/9 spoke to hospital about Hugo today, he is still sweating and has loose stools. They are not too worried if we are comfortable with him.
26-27/9 Good weekend, Hugo been on good form, babbling, rolling, full of beans and just very excitable. Has been taking food tastes again and coping well with them, tried to grab some toast off me this morning and so I let him have a bit to suck on. However he very quickly chewed a piece and it got stuck at the back of his mouth and he started to gag, luckily I had suction to hand and managed to get it out - but not a good idea!!
28/9 Easy day as long day at GOSH tomorrow, Hugo very full of beans and babbling lots. Diuretics have been increased. His weight has gone up, this is probable reason for sweaty episodes.
29/9 Left home at 8am in order to reach GOSH for appt at 11.40am. Had to stop after 25mins as Hugo had dirty nappy, then another stop at south mimms as needed a quick break (me and John). Set up a feed on route, but had to run it a lot slower than normal in case he vomits on the journey. Got to GOSH by 11.15am so quickly got everything out and got Hugo into x-ray. They were running 20 minutes late and it was very hot and stuffy in the waiting area. Hugo was in good mood though and was watching the children’s play lights. Got in for appt and Hugo started to show signs of falling asleep. The x-ray room was very hot and stuffy and I could see Hugo’s eyes starting to shut. He got a bit unsettled and we tried a couple of spoonfuls of food - although there was so much barium into it that it was just white goo. They have to use barium to trace it on the x-ray. Hugo had a slightly wet nappy so we got him out to change him and the poor love fell asleep as soon as he got into my arms. We changed him and tried to put him back in the chair and wake him. We explained that once he was asleep then you generally wouldn’t wake him.
We had to leave the room very quickly and were not allowed to come back later.
When we got out we were asked if he was hungry, had we made sure he had not been fed. I explained that Hugo has nothing orally and so does not associate food with hunger and if he is not interested in eating then you can’t make him do it. We did explain that we had driven for over 3 hours to get there and that it is a very long journey for Hugo.
So got Hugo back in the car and set off for home. Thankfully on the way home we diverted into see Matt, Keeley and Betty for a very needed cup of tea. Hugo had a small vomit, on their carpet! Sorry guys! And seemed to react a bit to the barium. But had a little sleep and seemed ok once he woke. We got home by 6pm so not a bad journey home.
30/9 Hugo has been a bit grizzly today, has a lot of secretions and is very rattly in his chest. Have been dosing him with paracetamol. Tried doing some tasting today but he is not so interested. Spoke to his peaditrican, she couldn’t understand why it was so rushed but is happy for us to do the next one at Hinchingbrooke with her present. Decided to stop one of his medications next week and do bloods next Tuesday. There is a noticeable difference where we have increased his diuretics, which is good.
1/10 Can’t believe its October already! Had a good day today, taking taste’s well and very happy boy. Has been in his baby bouncer for ages today and then getting very cross when taken out!
2/10 Today we have managed to bring Hugo’s feed rate down to about 45 minutes - big progress. He is really rolling and moving himself around so when feeding we now cant leave him at all or he will either knock his feed over or if he pulled hard enough, then he could pull out his tube. John found him halfway across the room with his tube stretched to its limit!! We can now work at bringing it down some more.
3/10 nice easy day chilling with my boy, John working last night so in bed all day. Hugo has been very active, in his bouncer, trying to stand (with my help) and very much moving himself around the lounge.
4/10 My 30th birthday!! Had a lovely day, very spoilt by my husband and Hugo, they got me a new camera and a DVD and some lovely cards. Thanks to everyone for my cards, and a very big thank you to those of you who sent a donation on my behalf to GOSH. I really appreciate it thank you. Managed to bring Hugo’s feed down to 40 minutes today - very exciting.
5-8/10 John and I were away at Center Parcs this week. It was supposed to be our first family holiday and we were very excited to be taking Hugo away. Sadly our villa was in a poor condition and we were very unhappy with it.
On Tuesday night Hugo had a very bad vomit, had us both very worried as he would not stop for about an hour and we really didn’t know what had caused it, it was not feed related and he was asleep when he started. He didn’t settle until 1am and we finally got to sleep about 1.45am. Hugo woke completely fine and full of beans at 5.30am - very glad he was ok.
We tried to make the best of it and had some lovely walks and took some lovely photos of Hugo. Just both came back much more tired than before we went.
9/10 Very glad to have slept in our own bed! Have had a date for next Tuesday to have Hugo’s next video fluoroscopy at HB. Spoke to our local SALT who have been informed by GOSH that they could not do Hugo’s video swallow because Hugo was miserable!!!! I explained to her that was not the case.
Hugo became quite unsettled late afternoon so gave him some paractemol and had a long cuddle. Think that this week has really unsettled him being out of routine.
10-11/10 Had a good weekend. Nice and relaxed, spent Saturday taking it easy with Hugo, had a lovely long walk in the afternoon. Sunday had a lovely afternoon at Dad and Karen’s. Sue and Phil were visiting and we had a lovely afternoon with them, Hugo had lots of cuddles and attention and completely showed off to them all.
12/10 Saw Hugo’s teacher of the deaf. He is happy with Hugo’s progress and feels that he is responding really well with his hearing aid. We have discussed Hugo now having his right ear fitted with an aid and we are going to get this done tomorrow.
13/10 Another long day of hospital appointments. Hugo had an audiology appt at 10.45am and had a fitting for his right hearing aid. Very good mould from his ear so should have a new one within about a week.
Then had an hour and a half break. Thanks to Nana and Granddad for giving us a very quick lunch. Then into children’s unit for bloods. He was very brave and hardly cried bless him. Then at 2.50pm had video fluoroscopy. This time Hugo was on ok form and did not fall asleep. Although he was more interested in watching all the ladies who were present during the test. We had to try him with a bottle first and then some food. Unfortunately Hugo is aspirating into his lungs. This means that when he swallows some of his food/water is going into his lungs, this is a very big source of chest infections and could lead to pneumonia. We are now allowed to continue with his tasting, but only very small amounts, never any more than 1 teaspoon during one time. He can only have small sips of water from a bottle and only on its own, he must not have any water at the same time as food or it could easily go into the lungs.
This is a real disappointment to us. Hugo has shown great signs of wanting to eat/drink and we had really hoped that we might be able to move forward with this one. However his lungs are clear so he is ok and we must make sure they stay like that. As it is also coming into winter we have to be even more cautious and not push him too far (we don’t anyway).
It is a big reminder that Hugo is not in any way becoming ‘normal’ he is likely to have his feeding tube for some years from now, possibly until the age of 8. There is still a chance that because of his bulbar palsy he may always need the tube. Sometimes even we get carried away, we have cherished seeing him take a bottle for the first time, you really take for granted how babies just take a bottle when they are born. Seeing Hugo do something so normal was very boosting and I suppose that I have hit the ground with a thud yesterday.
Anyway, his electrolytes are all good, we are just waiting to see if the results of his parathyroid bloods.
14/10 Had early learning teacher and Portage worker in this morning. They come in to over see how Hugo is getting on and make sure he is getting the help that he should be and is catching up to the stages he should be reaching. They are very pleased with him. He is making tremendous progress and they are really happy with him. I have finally been told of a weekly meeting group for children with special needs. It is in the next village so we will maybe give it a go in a few weeks when Hugo has his swine flu vaccine.
Had our winter flu jabs today. Hugo been very grizzly latter afternoon but still full of his normal beans and after a dose of paractemol, he was back to his normal self. See how he goes overnight.
15/10
Hugo was unsettled overnight with a high temperature and his heart rate was quite high for him. I gave him some paracetamol at 2am and he kept stirring until he woke properly at 5am. His Doctor rang with Hugo’s Parathyroid hormone results. He is on the lower side of normal so we are stopping his medication for the time being to see how he gets on and we will do another blood test in 4 weeks.
16/10
Hugo was awake at 5.50am. John and I felt that he was looking puffy today and his fontanel has been bulging, we spoke to Hugo’s peaditritian and she said to see how he goes, although she has increased his diuretics slightly to match his weight. If we are really worried we can take him into clinic on Tuesday for an ECHO. Had the community nurse out today as his G-tube is weeping and has a smelly discharge. She felt it was ok. Hugo’s feeds have slowly increased over the last few days and he is now on 140mls per feed. John was working tonight. I put Hugo to bed and he was fine, but just as his last feed finished he vomited. I really struggled to clear his airway on my own and after about 20 minutes of struggling Hugo had gone very pale and was mottled. I got to the point that I couldn’t manage on my own so I rang John who said he would come straight home and I rang my mum, she was able to get to me a lot quicker than John. It was very worrying being on my own when this happened. Thankfully Hugo relaxed and settled and we took him downstairs to keep an eye on him. He finally fell asleep about 1.30am.
17/10
Had a much better day. You wouldn’t think that we had any problems yesterday! Hugo has been very playful and happy today. Much more himself. I have kept his fluid down today and have reduced his feeds to make sure that he doesn’t vomit again.
20/10
Its been a busy day, started with a family visual clinic meeting at 10.30am. This was a meeting with a paediatrician, ophthalmologist and our visual impairment teacher. Meeting went well and Hugo showed off very well. Think they were all impressed with his performance, makes us very proud!
Then had clinic for an ECHO. Discussed how Hugo is doing and she was asking us about Hugo’s time in GOSH. His ECHO looked ok, there is no improvement, but it is no worse. He needs to stay on the diuretics. We discussed his long term plans and future surgery’s and there was talk about Hugo needing to possibly go onto some more long term controlling drugs, but we will wait until the new year before going any further forward with that.
21/10
Hugo’s visual impairment teacher came in this morning, she is trying to get Hugo some toys and lights to have at home, so look forward to getting them. Had a phone call to say that Hugo should be having his swine flu vaccine next week.
22/10
Hugo has been very full of beans today, went out for a drive in Johns van which Hugo loves as his car seat is next to the window and he can see out and watches everything. We are hoping to hear from the dietician as still not had any response and Hugo still has very runny poo and his feeds are now back to being run over an hour. His volume is 120mls per feed.
23/10
Hugo woke quite lively this morning and ended up vomiting a small amount of his feed. He has had a lot of secretions today and required a lot of suctioning. Feeling quite run down today.
24/10
Had a nice day, Dad came round with Nanny, was great to see her and she was full on with Hugo, fussing as best as she could over him. She just kept saying ‘oh he’s lovely’ bless her. I did us some lunch and we had a lovely couple of hours. Hugo has been sitting quite well today and when he is on my lap is now really trying to sit forward. He now loves sitting on my lap watching strictly come dancing. I think he loves the lights and sparkles and music, he now gets very excited when the music starts!
25/10
Hugo had a good day, had a bath about 5pm and he loved it as usual. He had his feed at 6pm and had just fallen asleep as I was putting it on. The feed finished at 7pm and he was fine, then at about 7.15pm he went funny and rigid and let out an odd groan, I was upstairs and John called me down (was just getting in the bath!) as I got down and picked him up he seemed to be swallowing/refluxing. He then vomited all over me, we had to suction him but he just kept being sick (problem with suctioning is that when you do it, it makes him more sick, but he can’t clear his airway so we have to keep doing it or he would choke )
Things got very stressful, he had started to recess and had gone very grey and mottled. We put him on the monitor and his sats and heart rate were both good. After about an hour he fell into a very restless sleep. We had stripped him and so got him into some clean clothes and we just sat with him keeping an eye on him. His last feed we reduced down to 80mls and he had this about 10.30pm. He had no problems with this feed.
26/10
I rang the hospital first thing, Hugo‘s Doctor feels that Hugo is not tolerating his feed volume and suggests reducing the feed to 120mls per feed. We are going to give him first and last feed at 100mls and 3 daytime feeds at 120mls for the next week or so and see how he does. If he continues to keep vomiting then he may need to restart his reflux and anti sickness medication. She is going to check him over tomorrow and listen to his chest to make sure he has not aspirated. He is now not having his swine flu vaccination. The hospital are not allowed to give it to him, so he has to wait until our GP’s have them in.
It is very worrying when Hugo is unwell and today has been a very hard day. The health visitor came to see Hugo for his 8 month check, when she was checking him she noticed that his testes had not yet dropped and she could not feel them higher up so she suggested mentioning it tomorrow when we go to clinic.
27/10
Hugo has had a good 24 hours with no problems. Were at the hospital at11.30am. His chest is clear although his upper airway is congested ( we have been having to suction him more so had already felt this) His peaditricain also checked his testes and can only feel one higher up in his abdomen. She is referring him for an ultrasound. Basically the worry is that if his testes are staying high in the abdomen there is a worry they can become too hot and this can cause problems with fertility, although we don’t expect Hugo to be able to have children of his own, it needs to be sorted out and cant be left. Another problem arises!!! Will it ever end???
We were also asked how we are coping with things. His doctor knows that we have a lot to deal with in Hugo’s day to day care and is worried that we aren’t getting enough support. She has also discussed Hugo’s health as it stands at the moment. He must have the swine flu vaccination as soon as it is available. Hugo is acutely unwell and she wants to make sure he remains well through the winter. She feels that we are doing the right thing by not exposing him to playgroups and crowded areas for the time being. It is good to hear that we are not being paranoid in our worries for Hugo. If Hugo becomes ill she will not hesitate to admit him or prescribe antibiotics. Our community nurse came for a catch up meeting this afternoon. She also bought us a replacement monitor as the one we have needs to be pap tested. New one is not as good!
28/10
New monitor did not work so John was awake half the night! (very grumpy John today!). Got new one late afternoon the same as the last so all sorted.
31/10 - 01/11
Easy weekend, John at work so just me and Hugo for most of it. Hugo has been taking small amounts of water by the bottle. He has spent quite a bit of time in his playpen. His feed reduction has made a big difference and he is coping really well with no reflux or vomiting.
02/11
Trying to get Hugo to sleep better at night so have had him in his bouncer for longer periods today, remains to be seen if it works!
03/11
Fantastic day, we went to the coast for a long awaited day out - it rained all day!!!! However had a great time, apart from John knocking my latte all over me! Ended up with a lovely long walk along Hunstanton sea front just as the sun was starting to set. Hugo was brilliant and seemed to enjoy the brisk sea air almost as much as John and I.
04/11
Hugo on great form, very happy and excited, especially when my niece Caitlin came in for a play earlier. Bit unsettled late afternoon and I gave him some calpol, but seemed ok afterwards.
05/11
Another day of trying to prove Hugo’s medical needs, we need some new ends for his gastrostomy tube (the part you have to screw his syringe into) and our dietician won’t allow us to have them, she is sending round a nurse tomorrow to assess his needs. We have asked to purchase them ourselves but still not allowed them? Stupid! Have noticed his G-tube site is looking quite red and angry today.
06/11
Had SALT round this morning to tell us that Hugo must not have food orally, she said that we could continue to give him very tiny amounts of tastes but a very small amount, which we know anyway. He can’t have another video fluoroscopy now for another year so we have to just keep him as he is until next year. Our community nurse was here also and I got her to check Hugo’s G-site. She felt it was ok just a bit red and said to keep an eye on it.
Homeward nurse came by this afternoon to see us about the extra medical supplies. She has also checked Hugo’s tube.
When we were last up at GOSH we saw the stoma nurse who told us to stop pushing in Hugo’s tube when we turn it each week. So we have been doing this. However the nurse told us that we must always push it in and so suggested that she do it for us, it was stuck a bit and we had to use some Vaseline but it did turn fine. About half an hour after she left we noticed it bleeding and looking very angry so rang the community nurse and they said someone would pop out. She came about an hour later, had a look felt it was ok and no need to swab it and to keep an eye on it over W/E.
07-08/11
Easy weekend, just pottering about, took Hugo out for a walk round the village and generally doing normal boring stuff!! His stoma site is looking a lot more red and is now oozing and crusty, not very happy with it and quite sure its got some sort of infection. He is fine in himself though and doesn’t seem to be suffering any other side effects. We have decided that we will take Hugo into the hospital when I am in for my appointment tomorrow.
06/11
Rang the children’s ward and saked them if we could bring Hugo in this morning to have his stoma site looked at. I am concerned that the hole has become slightly bigger, his doctor agrees that it looks slightly bigger and is worried that if it does not get any better we may have to take Hugo up to GOSH to have a new gastrostomy tube fitted. She gave Hugo antibiotics, I was worried she had given him too big a dose but she has done that on purpose as she feels a more aggressive approach may help to heal the site better and quicker. The last thing we need is having to have it changed as it would involve a general anaesthetic and Hugo really needs to hold out on having one. Hugo was also weighed and he has only gained 70g in two weeks which she is worried is not enough. He is not on a big enough volume of feed for his size and weight, but obviously because of his problems with tolerating the feed we cant just increase his feed volume. We are still waiting for the dietician to contact us.
10/11
Hugo’s antibiotics have kicked in and he now has a very upset tummy, stoma site still not looking great.
11/11
Hugo had his 2nd flu jab today, all went ok. Had hoped that he would get his swine flu jab today but they are still not in. when I asked about it the nurse told me that when its in Hugo will get one but she doesn’t know when it is. I explained that I am worrying about Hugo not getting it and she told me that I was getting in a tizzy and I should calm down! Left very cross and upset, I sometimes wonder if people really understand the worry we go through with Hugo. He was quite grizzly later in the day and I gave him a dose of calpol which seemed to do the trick.
12/11
Poor Hugo, antibiotics have kicked in with vengeance and he has a dreadfully sore bum!! Hugo’s Doctor phoned with Hugo’s swab results, he has a skin infection although it is not MRSA (didn’t realise they thought it was!!) so she is very glad that she gave him the dose of antibiotics.
13-14-15/11
Hugo still suffering from his antibiotics, bum terrible but his stoma site is looking loads better - phew, think we may have done good this time. Had a letter Saturday morning - Hugo has his swine flu vaccine Monday evening!! Thank goodness for that. We have left his nappy off for most of the W/E which seems to help a little. Hugo is still taking small drinks of water from the bottle and doing very well with it, he now wants to hold the bottle on his own, so seem to be making a bit of progress.
16/11
Had Mark (Hugo’s teacher of the deaf) here this morning, he is very impressed with Hugo and how he is doing, the sounds he is making and how he is responding to us and obviously him. He has checked Hugo’s hearing aid and is happy with it.
Hugo had appointment at the hospital at 2pm, we have managed to get on top of the infection but he has been prescribed some antibiotic cream for his bottom which is now very sore and blistered. His weight has gone up and he is now 8kg!!!
We had an audio logy appointment to have Hugo’s right hearing aid fitted, however because we ran 20 minutes late with his Doctor they said they would not see us, even though the childrens unit had phoned through and I had already spoken to them last week. very annoying and now have to wait another two weeks before it can be fitted.
Hugo had his swine flu vaccination at 5.30pm, was a bit of a mad as the surgery was packed with people, most of who were adults and a large amount were coughing - Grrr, we spend most of our time not taking Hugo into environments like this and found it very stressful. Hugo had was asleep and hardly stirred when they gave him the jab, he has to have 2nd dose in three weeks. He had no adverse reactions and only a red mark where the needle went in.
17/11
Had a lovely visit today from Matt, Keeley and Betty. Its been a great day of playing, talking and having a lovely walk with them all. Betty looks fantastic and is growing so much and getting very long! Hugo was quite impressed by his visitors.
18/11
Hugo was up at about 6am so not a bad nights sleep for him and us. We had our visual impairment teacher here today with our worker from Portage. VI teacher was doing lots of play with lights and flashing toys today. Hugo was on top form and really concentrating on what she was doing with him. She had him sitting up while she worked with him and he sat for about 15-20 minutes with very little support from me. He was doing so well and getting very excited by certain lights. He also seemed to love some of the shiny rustling toys she had. We have been lent some new light balls and a fibre optic light, which Hugo loved. Later in the day I also managed to buy a small fibre optic light which he also loves, we just have to watch him as he keeps poking his right eye and because it doesn’t shut we will have to be careful or he could really scratch the eye. Its so rewarding seeing him making such good progress with his vision and we remain hopeful that his right eye has improved.
19/11
Hugo has been awake since 4.30am! Very full of energy today and showing off lots. We had to turn his g-tube today which was the first time since his infection, it was a bit tough but went in the end and it is not oozing or bleeding which is good. We had a lovely walk this afternoon and then Hugo fell asleep and wouldn’t wake back up (it was only 4pm) so I spent 20 minutes trying to wake him and finally at about 5.20pm I got him to wake up!! Little monkey!
I had to go into hospital on 23rd November for an operation. John coped fantastically well and managed to look after Hugo all on his own. My sisters two children had come down with a tummy bug so Mum was supposed to be on hand to help but had to stay away! Typical!! All was ok though and had my Dad on hand who came in to see me and make sure I wasn’t lonely - thanks Dad and Karen! and also had a visit from Troy and Louisa, so thanks girls!
I couldn’t do anything when I got home and was not allowed to lift either so Claudine came to stay for the weekend to help with Hugo so John could work.
I think Hugo knew he had to be ‘well and good’ for Daddy because he was brilliant and no trouble at all!
We have been so busy with hospital appointments in the last few weeks and in the last two weeks been up at Hinchingbrooke for at least two visit’s a week!! Hugo finally had his right hearing aid fitted on 1st Dec, although it doesn’t fit very well and we had a new mould done yesterday (15th) so hopefully that might work better.
Hugo in himself has been very good, he is babbling all the time now and can now say dada, nana, ga and mmmmm. He is always babbling with some sort of sound and very noisy! (remind you of anyone?) he is also so close to crawling and really loving being all fours trying to go. He can go backwards, and finds himself very frustrated that it’s the wrong way, he is very funny to watch. He seems to have boundless energy at the moment and only stops when he is out of power!
We have had another bad bout of Hugo vomiting his first feed of the day, this went on for about 5 mornings in a row and was very difficult to manage, however we have now tried a few new ideas and are now having to sit him in his highchair while feeding his first feed and we have also started to mix a more thin feed in with his usual Infitrini. So far this seems to have worked. We finally got an appointment with a dietician yesterday and she is a little concerned that Hugo is still not tolerating feeds well and not managing a big volume. He is now going to need to move onto a different feed for older children. It will be a much higher calorie food than what he has now so he can have less volume but still get what he needs to grow. It also has added fibre to try and help his bowel problems. His weight yesterday was 8.12kg which is 17lb 14oz so he has only gained 1lb in the last month and can’t afford to lose any weight.
Lastly Hugo has had another bad infection in his stoma (gastrostomy) site. We ended up in Hospital on Saturday night as they wanted to check him out with the idea that he may have to be kept in and given IV antibiotics, thankfully they let us go! However we got the swab results back yesterday and it is apparently ecoli??? So we have had to change all his antibiotics and are now wondering where on earth that has come from and thankful that he has not been more poorly with it. Hopefully he is now over the worst.
This year has been a really tough one and John and I still at times find it hard to believe how Hugo started his life and how much he has gone through to get to now. We have learned a lot and have so many people to be thankful to.
Hugo will be one in three weeks and we are so happy that we have been able to come so far with him, We are just incredibly lucky.
Not a day goes by when we don’t think about all the other little boys and girls we have met during our journey this year. Sadly some of them are no longer with us and its now at Christmas that we are thinking of their families.
Some days when we are struggling with Hugo I wonder why he has to go through so much and wish things could be different, but they are not and so we must just carry on. You only get one go at this life and even if its not what you had planned, you have to grab it with both hands and hold on to it, because some of us don’t have that chance and when I am holding Hugo this Christmas I will be thinking of them all.
Can you believe it is February already? Time is running away with us already!
It has been a busy month for us all here and Hugo has kept John and I on our toes!
On 4th January we managed a few days away with Hugo to Center Parcs. Unfortunately on the 6th Hugo started to become unwell late in the evening. John had started his 11pm feed and Hugo sounded very snotty and was breathing hard and fast.
7/01: 3am Hugo had a temperature of 39° c was struggling to breath and was very unsettled. John and I decided he needed to go to hospital and quickly set about packing everything. We left the villa at 5.45am and arrived home at 7am, just as it started to snow everywhere (except Peterborough!) on arrival Hugo was again running a temp and just not well. We rang Hinchingbrooke and spoke to Hugo’s doctor, she wanted him to come in to be checked over.
We arrived at 11am. Hugo was sent for a chest x-ray which was fairly clear. She took swabs of his nose, throat and mouth. She has started antibiotics. Hugo’s temperature continued to rise even with calpol. He remained unsettled, with a running nose and very croaky. He did have a room ready on the ward to be admitted but Hugo’s doctor felt he was well enough to go home and for us to monitor him overnight.
8/01: A very unsettled night, heart rate was raised, very uncomfortable and croaky. Temp still high and needing to suction regularly because of snotty nose and secretions. Dosing still with calpol and ibuprofen. Bacterial swab results clear so that’s good news, late pm started to perk up a little.
9/01: Hugo is much better today, more settled and more like his normal happy self
10/01: HUGO’S FIRST BIRTHDAY. We have had a brilliant day, I put up some balloons last night so when we bought him down this morning he had a decorated room with all his presents.
He has been very good and not minded all the fuss at all. He has been interested in the presents and cards when we opened them. He has had some lovely gifts so thanks to those who sent them. I made some cup cakes (even though he can’t eat them!) and we lit candles and sang happy birthday to him, which he loved. It has been such a lovely afternoon. A really wonderful and special day for us.
11/01: Hugo’s teacher for the deaf was here this morning, he has re done all of Hugo’s tubing in his hearing aids and they now fit much better. Hugo had a very good reaction to sound once his right aid was fitted in properly. His swabs have come back, with Rhino virus, which to you and me is the common cold!
12/01: Cancelled meeting with Paediatrician as she now has a bad cold and doesn’t want Hugo to visit just in case.
18/01: Physiotherapist appointment at home. Hugo’s therapist is happy with his development and progress. She wants us to try and work a bit more on him standing up against the sofa and trying his cruising movements, (although not as easy as it sounds when he doesn’t want to work on demand!) He can still not sit or stand unaided and is still not crawling. He seems to struggle still with his strength.
His feed had become slightly behind so I decided to up his daytime feeds to 130mls per feed. Hugo tolerated three feeds like this with no problems. He has been a cheeky boy today. Had a good evening and he fell asleep about 8.30pm. John did his 11pm feed, but just after it finished at 12am he vomited. He managed to cope well with it and although he became very upset he did not get too distressed. It took us an hour to calm him down, maybe the increase of feed was not such a good idea!
19/01: Had our appointment at Hinchingbrooke this morning. Hugo woke with no signs of last nights problems. We were having an ECHO as Hugo has been a bit unsettled with his breathing and showing signs at times of slight puffiness. Our cardiologist was very happy with Hugo. His ECHO does not really show any changes in his heart, which is a good thing although he still needs to remain on his diuretics. There is still regurgitation and his right side remains slightly enlarged but no worse than his last ECHO. She feels that his puffiness is more related to ‘baby fat’ and not fluid, his weight has not increased much so this is all pointing in the same direction. He laid down as good as gold while she did his ECHO and was quite happy playing with her top and holding her arm with his feet!!
We then saw his paediatrician and dietician. Hugo’s cardiologist has recommended that we try Hugo with some feeding again. There is a worry that he might miss out on trying to feed if we don’t try. Obviously we have to go very carefully, he still has an unsafe swallow and could aspirate into his lungs, but she wants us to try and see if he will take to feeding. This is quite exciting and Hugo can now take small sips from a bottle quite well, but we remain open minded, this doesn’t mean that he WILL be able to eat.
Hugo then had some bloods done to check his levels, these all came back good and at the correct levels. We spoke with the dietician about his food. He is going to remain on the same calories for the time being. He is shorter than average and because of this he doesn’t want to gain too much weight or he will be classed as overweight and then have to lose some, all sounds a bit confusing, but hey ho! He is currently weighing 8.28kg which is 18lb 2oz so he has only gone slightly since his last weigh in December, but they want to just monitor him for the time being.
Lastly our paediatrician has written to the Neurology department at GOSH in regard to Hugo having follow up care with them. Obviously he is still struggling with his physical development and although it is possibly still catch up from his time in hospital, there is also the concern that his Dandy Walker syndrome could be holding him back.
21/01: Hugo had to have his 12 month immunisations today. He was very good and did not cry just let out a little yelp when they did them. It was very frustrating as we had to wait again and the waiting room was filled with patients (obviously ill as it’s a doctors waiting room) it doesn’t matter how many times we ask if we can go when no one is in, we never seem to be taken seriously. We were able to go into the baby room a bit sooner, but we still worry that he might pick something up.
22/23/24/01: Had an easy weekend. John has been working, so I have done both day and night feeds, which is tiring. Hugo has been very active and full of beans. We have not been able to go out for a walk as its been teething it down with rain here! We have tried him with some puree, but he is not interested in it at the moment and really wont take any into his mouth. Trying not to push him and make it not nice but at the same time really want him to understand it. Sadly Hugo has never had food so just doesn’t understand what it is in the same way we do.
25/01: Today we have started Hugo’s new feed. He is currently having half the new and half the old so he gets used to it and doesn’t just vomit it. So far he has had no problems. We have again tried some food puree and he seems a bit more interested, although he now shakes his head for no!”
I had my swine flu vaccine today.
26/01: Hugo has been ok today, managing new feed ok. We have noticed he is panting quite a bit and sort of puffing with his breath, hoping nothing brewing?? He became a bit warm after his bath, but seems ok in himself and very happy and full of beans. When I went to bed his heart rate was a little high for him sleeping. He is also panting a bit in his sleep.
27/01: Hugo woke at 3.30am, very unsettled and a temp of 38° c I gave him a dose of calpol and he settled back down until 6.30am. When we got up he had no temp and seemed full of beans and ok. Had my friend Carla for a visit today with her daughter Molly. Unfortunately Hugo just wasn’t himself and did not really want to play, however Molly did and had fun regardless of Hugo! His temperature was up again at 38° c but after calpol it came back down. By 6pm it had gone up again, he fell asleep just after 7pm but was breathing quite noisily and his respiratory rate was up. After half an hour or so he settled. His temperature continued to rise between doses of calpol and ibuprofen.
28/01: Hugo remained unsettled overnight and his heart rate was still high while sleeping. His temperature has reduced this morning which is a good sign. He has struggled to tolerate his feeds today, getting to 100mls and then getting upset so we have been having to stop when he struggles. By the afternoon his temperature had again risen above 38° c he is having regular calpol and ibuprofen. He looks very pale and peaky. I rang the hospital at 3pm to get some advice. At the moment we are to continue monitoring him and as long as his chest is not sounding crackly and he is still quite active and not listless just keep on top of his calpol. He has been quite clingy this afternoon and wanting picking up a lot which is unlike him, so he must be under the weather. Temperature has remained raised but he went off to sleep fine and although became a little sweaty seemed to have no other problems.
29/01: Woke at 4am to Hugo’s monitor bleeping and him making strange sort of chugging noises. Quickly got up and checked him, he felt very warm - temp 38.8° c gave calpol and got him out of his cot. He fell back to sleep at about 5.30am in our bed (again very unlike him, he likes his own bed!). He woke at 7.30am and was still not right. I rang the hospital and they said we could take Hugo in. His temperature had reduced which was good but he was very pale. His paediatrician checked him over and did swabs to check for infection. She sent us for an x-ray as he was holding his head back as if struggling for breaths, x-ray was thankfully clear. Decided that he could have a viral infection and after a full check we took him home. Because of being in hospital his feed was running late and his last feed was not until 12.15am, John had not gone to work because of Hugo and so did the last feed. Ten minutes after the feed finished Hugo vomited, he really struggled and we had to suction him quite a lot. He became very distressed and would not settle. He got worse and more distressed and became inconsolable, something we have never seen him do at home, only during his time in GOSH. This had us worried. Hugo did not sleep from then on until 5.30am when he finally fell asleep in our bed. John and I knackered, poor john had no sleep but I managed 4 hours!
30/01: Hugo woke at 7.30am, he seemed a bit better but when changing his nappy we noticed him covered in spots!!! First thought was chicken pox? Rang the hospital who wanted him in to check over. We arrived at 11am and were put into a side room (in case we are infectious) Hugo was checked over, his temperature was still raised so we were kept in for observation. Saw one of the registrars who felt it was probably a viral rash, but we had to wait and see what the doctor said when she came round and until then they wanted to monitor how he went. He was as good as gold, considering how poorly he felt he laid in the cot and was happy to play with his toys we had bought with us. At about 2pm he fell asleep and had a good hour before waking. He had some more calpol and that helped. Finally at about 4pm the doctor came into see him and also agreed that he had a viral rash and although looked like chicken pox was definitely not. We were offered the chance of Hugo staying in overnight if we needed a rest (very kind) but we decided to go home with him where we felt we would all be much more comfortable. Got home about 5ish and an exhausted Hugo fell asleep at 6.30pm. John had to work tonight, can’t afford any more time off.
31/01: Hugo is much more himself today, woke at 5.30am - hard work for me! I’m not feeling well today, got very sore throat and feel pretty lousy. We have reduced his feeds again today to make sure he is tolerating ok. We have also had to go back to his old feed for the time being just so we don’t upset his tummy any more. His temperature has been a bit up and down, he is still having regular calpol.
1/02: Can you believe its February already, the year is already going fast! Hugo is much better today, still a bit spotty but looking much better. However his stoma site is very red and angry now. Had result from some swabs, which were clear, still waiting on the others. If his site has not got any better in the next 48 hours then we may have to start antibiotics again - grr!
2/02: We have had a good day today, my friend Louise came over for lunch which was lovely and great to catch up with some normal adult conversation. It also breaks up the day for me, as still not going out with Hugo.
Hugo has been a lot brighter, although his stoma site still looks very red, I am thinking that he definitely has an infection again. Poor buggar seems to be picking up infections left right and centre!
3/02: Hugo vomited his first feed slightly this morning, he is still quite pale and seems a bit under the weather again. His stoma site is very red, oozy and has a yucky green puss - urgh! I had taken a swab of the site and rang his doctor, she is starting antibiotics and also an antibiotic cream for the site. Got to take the swab into our GP’s to get it sent off for testing.
Also discussed Hugo still struggling with his vomiting, for some reason he is not holding his feeds and obviously we are not going forward with his feeding. It still takes an hour for his feed to run and he is still only on 560mls a day. Ideally a child who is gastrostomy fed should be aiming to take gravity feeds by now. This is when the feed is given in a big syringe which you do by hand over a short amount of time. The current option is to restart some of his medication for anti-sickness and possibly reflux. We agree with this. We currently spend five hours a day having to sit with Hugo while he feeds. Obviously we have to monitor that he is not sick, but now he is older we have to make sure he doesn’t pull his feeding tube out, so he is either strapped into his high chair or we have to sit and hold him or keep a close eye on him. Some days this is very exhausting, especially at the moment. We will see how he goes over the next week and what or if it makes a difference.
4/02: Stoma site a bit better, although Hugo is very tender around his tummy and yelps if you touch him. I am feeling even more rubbish today, my throat hurts and am losing my voice! Today we had a lovely surprise visit from the Photographer who took photos of Hugo while he was in GOSH. He stayed for a couple of hours and took some more pictures, he was really pleased to see Hugo looking so much different to the last time he saw him in CICU!
5/02: I am officially exhausted. We have now had 11 days of Hugo being unwell and with his feeds and the extra medication I am running on empty, I have no voice now and feel bloody awful, but John has to work tonight so I am alone here and having to do the late feeds as well as the early start. Hugo is back to four meds now plus the doses of calpol and ibuprofen he is having, I feel like I am constantly pumping medication into the poor little lad. Hugo is brighter today and his stoma site has cleared up a lot more so that is great as obviously his antibiotics are working.
6-7/02: A very busy weekend, rushed off our feet with John working and me doing all Hugo’s cares, me having no voice, very amusing! I have managed to grab a couple of hours sleep when Hugo had his naps so not quite all bad, but have to say its been hard work and we are both at the most tired we have felt. Hugo is definitely much better and more himself. He is quite perky and starting to babble again so he must be feeling better. However he has now started to cough?? Really hoping this is just a late symptom of what he has had and he is not coming down with something else!! We have a busy week this week with hospital visits and various other appointments.
8/02: Hugo’s hearing teacher came this morning. He is very happy with Hugo again. He feels that he is again making a bit more progress with this hearing, he feels that he is more aware of what is going on around him. This is something we have already noticed. We have today started to try and change Hugo’s feed again. We are doing half new feed and half old feed to start with and see how he gets on. He is still coughing and sounds a little croaky again.
We have received an appointment for Hugo to go up to GOSH and see the Neuro-disability team. They will be looking at Hugo’s dysphagia, his swallowing problem. We have been trying him with oral feeding, but unfortunately Hugo is not taking any food at the moment. He seems quite reluctant to feed and now shakes his head for no. The appointment is to see how Hugo reacts to feeding and also to test how his mouth, tongue and swallow reflex is working when he has food/fluid in his mouth. Unlike the video fluoroscopy that we had in October, this is looking at his neurological problems. We are starting to notice where he is affected by his Dandy Walker syndrome, something we had been warned would begin to show after the age of one year. It sometimes feels like there is no end to his problems and although to us Hugo is normal, as he gets bigger although he does move forward well, he also shows the limitations that his body has and will continue to have as he gets older.
9/02: We have been to Hinchingbrooke today for Hugo to have a check up with his paediatrician. We also had an appointment with the dietician first. When we spoke to her about trying to reduce Hugo’s feeding time because of the length of time we spend with him while feeding. (obviously when he has tolerated the change in new feed and is well) she suggested that we might be better trying continuous feeding????!!!!! As it sounds, continuous feeding would mean Hugo stays connected to the feeding pump all the time, why that would help us is beyond me!
So onto our meeting with Hugo's paediatrician she is more than happy with Hugo today. He has been on good form apart from his cough and showing off quite a bit. We have discussed his recent sickness episodes. He seems to be picking up more infections at the moment, whether its because he is a bit run down we don’t know, although she is happy that he is fighting them well. However he has been on antibiotics quite regularly and we are showing regular infections in his stoma site so he is obviously struggling to hold these infections off. She has been unable to get his last results so I have to ring the communtiy nurse when I get home.
She has suggested that we should still take extra caution with Hugo and taking him out or into places. Even though he is now a bit stronger he is still very vulnerable. She doesn’t want us to take him into a playgroup or children’s groups just yet and she feels we should wait until the summer time before really introducing him into any groups.
We have also discussed our visit to GOSH in to see the neurologist and we are now starting to discuss Hugo having his gastrostomy tube changed. It needs to be done before October and obviously we want to start planning for it. Hugo will have to go down to GOSH for it and it could involve an overnight stay, although if he is really well then he may just be in for the day, it depends on his cardiologists and whether they will be happy with him going home after having a general anaesthetic.
We are now not seeing her for six weeks, fingers crossed that he stays well and we might just manage it (although I don’t know if we really will manage personally - seem to have lost my optimism) We will await details from GOSH in regard to his gastrostomy.
10/02: Hugo was very unsettled overnight, he woke at 5.30am with a temp of 37.8°c. I gave him a dose of calpol. He is coughing a lot. I got him downstairs and put his feed on, he only got to 70mls before vomiting it all back up, poor little mite. He was unsettled for a while but eventually settled back down.
He has had his visual impairment teacher here with our portage worker today. By the time they arrived he was on much better form and was very responsive. She did work on his grasping and taking things and how he watches his toys. He managed to sit for around twenty minutes with me just sat behind him for a bit of support. They were both very pleased with his progress. Afterwards he began to get very grumpy and I put him down for a sleep. Once he woke he was much brighter, he had tolerated his feed well and had no temperature.
I tried to ring the community nurse about his stoma swab results, but had no luck getting hold of her. I then rang our GP who got straight back to me, he has had mixed coli form, which is again a form of E-Coli. Because his antibiotics were due to stop my GP advised speaking to his Paeditrician to check he didn’t need another course, but she feels that the site looks good and we can stop them for now.
11/02: Hugo waking up really early again at the moment, so feeling tired today! He is definitely teething I think as he is trying to bite everything!!! Stoma site looking good so fingers crossed he stays off the antibiotics.
12/02: Hugo has started to cut his third tooth!! He has been quite happy today playing lots with his toys and really rolling over today to get to them. He is tolerating his feeds well and stoma site looks good still so think we are definitely over the worst now.
13-14/02: A long weekend, John is working and Hugo has been very unsettled. Not sleeping well and he has been waking at around 4am each morning, so I am very tired. On Saturday night I took him up to bed to see if he would sleep and when he wouldn’t I got him into our bed and we both fell asleep!! Sunday he was much more settled and full of beans.
15/02: Hugo has had a dreadful night of being awake. John looked after him until 3am then I took over. He finally woke properly at 4.45am, he was a bit thirsty so I took him downstairs, feeling quite tired and stressed out today. Thankfully he fell asleep at 9am so I put him back to bed and also myself too!!!
My nephew visited today with my mum and Hugo was in awe of his big cousin. Jake is so very good with Hugo and although he is very careful about Hugo’s feed tube and not being too rough, he also treats Hugo no different to any other child. He was trying very hard to make Hugo laugh and succeeding very well. He has been a bit hot and grumpy which I think is his teeth so I have given him some calpol and that seems to have done the trick.
16/02: A 5.30am morning, wow a lie in!! Hugo is on top form today and very chatty and playing really well. He has been in his activity station and really trying to get into a crawling position. He has also been giving me very sloppy wet kisses. We had a lovely walk and he fell asleep and slept all the way round. Had to wake him once home to have his bath. John helped me bath it and he loved it. He didn’t fall asleep until 9pm so I am hoping for not such an early wake up???
17/02: Today we had our first day out since we came back from Center Parcs in January, we went to visit John’s Aunt’s in Aylesbury. It was a long drive but worth it, We had a great day, Hugo was spoiled and very settled there. We also had a wonderful roast dinner - yum! That was worth the drive alone!! Hugo tolerated all feeds and was very settled and asleep by the time we drove home. A great day!
18/02: We have taken a big step forward with Hugo the last week or so with how he takes a bottle. He is now averaging about 80mls a day. However he is still not taking any solids, we have tried and tried to get him to take any form of puree, trying lots of different flavours and types, but he just doesnt want to taste. We are not giving up and keep trying daily.
19/02: Hugo has had a good day today and is very lively and full of beans, John and I are both really tired tonight and the upside of that is that John has decided not to work tonight, so I won't be here alone. In the last week I have made contact with a Mum in Wales who has a little girl with CHARGE. She is 16 months old and has almost identical symptoms to Hugo, including the Dandy Walker which is the first time I have come across someone else with it. It is nice to speak with someone who is pretty much going through the same thing as us.
20-21/02: Its been a busy weekend! We had visits on Saturday from my Dad and Nan and then Carol and her Mum. It was lovely to see them all and Hugo as always loved the attention. He is still sneezing a bit and has a little cough, and had to give him a dose of calpol on saturday but he is otherwise full of beans and on top form.
22/02: Hugo had a good night and slept until 6am after a little wake at 4am for a drink. Had a little problem with his first feed, he got to 68mls and had a small vomit. He has got a lot of secretions so wonder if that was why. He is also panting quite a bit at the moment towards the end of a feed and after, also when he wakes up or is sleeping he is sweating again. We actually took him out today to the shops, we were buying his new car seat and decided to take him. It was lovely to get out and about with him, although we were very careful about where we went. For the first time since leaving hospital John and I had a coffee in a coffee shop together with Hugo. How mad is that!! It was so lovely doing something so normal just the three of us and a big step forward.
When we got home we bathed Hugo, we are now brushing his teeth and he really likes it, so much so that today he took the toothbrush out of my hand and did it himself!!
Once he was bathed we got him ready for bed and then got his feed on, he was happy playing with his toys and fine. His feed finished and literally before I could flush him off he vomited the whole feed back up again!! Poor little lamb, we hope that he is not brewing anything as he has sneezed a lot today. Had to suction him quite a lot and not long after he fell into a very fitful sleep.
23/02: Hugo slept well, he has been ok overnight and tolerated feeds well. We have reduced his volume just as a precaution in case he is struggling with the volume. He has quite a few secretions but not too worrying and hasn't needed much suctioning.
24/02: Hugo slept until 7am!!! A lovely lie in! Today has been an easy day and we have not done too much, Hugo is quite pale today and is still sounding congested. He is also sweating a bit too, I rang and spoke to his paeditrician and we are increasing his diuretics to see if that makes any difference, we will keep an eye on him.
26/02: First feed this morning resulted in another small vomit. Hugo managed well though and did continue after he had been sick, I think it was again secretion related. He had a bath this morning and afterwards I turned his G-tube, it was a little tight to turn, but eventually turned fine. He has spent a bit of time this afternoon in his new walker, he is now starting to get the idea that you also can walk with it not have to stand still!
27-28/02: Tough overnight, Hugo woke at 3.40am with temperature of 38.4°c, his heartrate was 145bpm and he was very unsettled. He was very upset, so I gave him calpol and after about 40 minutes he settled, although I had to put him in my bed with me. He woke again at 6am still quite hot and a little unsettled so I gave him a dose of Ibuprofen.. He remained settled for the rest of the morning. During the afternoon he has been a little congested, but is happy and playing well with his toys. He was sitting quite well today in his special sitting ring and trying to sit forward on his own. He was on good form Sunday, a little congested and a bit croaky and he is sweating again. We have tried some puree tasting again but he is still not interested.
1/03: Into March already!! Hugo's physiotheapist was here this morning, she is impressed by how Hugo is doing and thinks he has improved again. He was really showing off for her today!! He was also very very nearly crawling for her. He is panting a bit today and it is more noticeable after a feed or sleep or when he is excerting himself. We are again taking notes and seeing how he goes before ringing his paeditrician. We have just got Hugo a big boys car seat. He has finally got big enough to have a forward facing seat and leave his baby carrier, so we took him out for a little drive today to try it out. Hugo loved his new seat and fell asleep in it, so it must be good!
2/03: Another unsettled night of Hugo waking every hour, we eventually put him into bed with us and he finally settled around 4.30am. He woke for good at 5.45am. He tolerated his first feed fine and had an settled morning. We had a visit from Di and Anne today which was lovely. Hugo was spoiled with attention by his Nana's and really showed off for them. He had his 2.30pm feed, at 67mls he suddenly vomited and became very distressed. We had to suction him quite a bit and he became very upset and struggled with us and clearing his airway. He became pale and very upset and took about 20 minutes to settle back down. However once he had recovered he became full of beans again and happily played until late into the evening. He tolerated all of his other feeds fine, but he is still a bit breathless at times.
3/03: We have had another restless night with Hugo waking at various intervals! We are both a bit tired at the moment. He is still a bit breathless, we have noticed that he is drawing his legs up when he is in his cot. He has also got very dry skin at the moment so I'm not sure if its connected in any way?
4/03: Hugo has had a good day, a little breathless during his feed, but otherwise on top form. He is in a very chatty mood today and really happy.
5/03: Another easy day with no problems and tolerating feeds well. We had to give him a little suction during the evening as he drank too much water and coughed some back up. When I suctioned him, he took the cathiter out of my hand and put it into his mouth himself! It was such a lovely moment, he obviously understands completely what we do to him and why it helps.
6-7/03: We have had a good weekend of nice walks and enjoying the fresh air. Hugo has been well, tolerating feeds and very settled. He has slept well too so I am hoping that we are over the bad few nights sleep. John has been at work all weekend so I am here alone, but we have managed fine. We heard some very sad news on sunday evening. The little girl who we have made contact with in Wales passed away today. It was unexpected and is very sad news to hear.
It makes us again think of how vulnerable Hugo is. We try so hard to keep him away from infection risks and do our best to protect him. It also makes us think about how precious life is and that its not here forever.
8/03: Hugo's teacher of the deaf came in this morning. He is again happy with how Hugo is doing. He checked both his hearing aids, although we are still not wearing the right aid as it keeps falling out of his ear. We have a hearing test on the 24th so his hearing teacher is going to come along to that too. Hugo has been well today and we have had a good day, tolerating feeds and very well settled.
9/03: Hugo slept until 6.40am this morning, such a good boy! He has had a good day, had a very little vomit with his first feed, but he coped well with it. He again tried to help me with his suctioning! He has been a little grumpy at times and I'm unsure it is just because he is tired. He has played well today and enjoyed being in his baby walker, he can now actually walk along in it so is now getting the hang of what it does.
We have had a busy few weeks (yes again!) of appointments so I am going to do a more detailed update on the specific appointments we have had. I also want to do an up to date summary of Hugo？ condition as I know there are some new ？ollowers？/FONT>
Hugo was born with CHARGE syndrome.
Hugo has the following conditions:
Tetralogy of Fallot with Pulmonary atresia - surgically repaired on 6/4/09
Severely visually impaired - bilateral colombomas and left microphthalmia (left side of his face smaller than right)
Hearing impaired - wears hearing aids in both ears, although problems with right ear deformity so aid does not fit very well in right side.
Brain stem hyperplasia - Dandy-walker variant
Bulbar palsy
Right sided facial palsy
Left sided vocal cord palsy
Gastrostomy fed
Unsafe swallow, requiring regular suctioning - queried aspiration risk
Tongue tie
Developmental delay
Gastro-oesophageal reflux
Hyperparathyroidism
Genital abnormalities
After his bout of tonsillitis Hugo responded well to antibiotics and within a few days he was obviously feeling and looking much better.
On 19th April the equipment which the Occupational therapist had requested arrived. Hugo now has a bath support which is brilliant and now means I can just about bath him alone with out John having to be there, this is the first time I have been able to do this with Hugo since he was tiny and makes a huge difference. We have also received a special support seat for him which again is brilliant and is already making a big difference especially for feeding.
Hugo had his ophthalmology review on the 21st of April. The eye test went well, Hugo responded for the first time to some of the card test痴 they did. He had eye drops in to dilate his pupils, so they can check the retina. Hugo got a little fed up with the waiting and was trying to go to sleep, they are often running behind on appointments and we were about an hour behind time.
When we got in to see his consultant , she was very happy with how he is using the vision he has got in his right eye. It is almost certain that he has no vision in his left eye.
We also discussed the operation they want to do on his left eye at GOSH, Hugo痴 consultant discussed this further with us. Because his left eye and side of his face is very small they want to put a shield over his left eye to encourage the eye socket to grow at the same rate of the right side of his face. It would mean surgery and we are not happy about this, but she suggests we see what they think at GOS and go from there.
The following day we had an ENT appointment at GOSH. We decided to make a day of it for the first time. We left at 11am and got into London by 1.30pm, a record journey in! we parked up at GOS and then walked down into Covent Garden where we had a lovely walk around and then had a bite to eat in one of the restaurants. The weather was wonderful so we were able to sit outside and relax without worrying about other people coughing or sneezing all over Hugo. Hugo was a complete show off and kept looking around at people who in turn then tried to talk to him and make a fuss of him, he really loves all the attention, especially with the ladies!
We left Covent garden at around 2.30pm as our appointment was at 3.50pm.
Hugo痴 ENT consultant is very happy with his progress. One thing that we had noticed was that Hugo has a slightly forked tongue, on mentioning this his consultant had a look and confirmed that he does have a tongue tie, this means the little bit of skin that attaches the tongue to the bottom of the mouth is too tight, Hugo will need to have it snipped off. They wont do this until he has an operation obviously because of the risk of putting him under anaesthetic.
He then asked if we had moved any further forward with Hugo痴 feeding. We explained about Hugo痴 meeting in the dysphagia clinic with the neurologist and SALT. There was nothing written in Hugo痴 medical notes so he could not see what the outcome was or what had been suggested for Hugo. When we explained that we had been told not to pursue any feeding and that we are supposed to stop the water he was very surprised, he asked how many chest infections Hugo has had - none.
He then said that he could not understand the findings of this and that in his own personal opinion, Hugo is showing no real signs of aspirating. He feels that unless we try to get Hugo to eat/drink he will never move forward and he wont overcome his vocal cord palsy. The reason being that the vocal cord works like a muscle and needs to strengthen over time and if Hugo is not eating/drinking it is not going to get used and wont become any stronger.
If we start giving Hugo food and he becomes ill with chest infections then we will know he is not safe, but unless we try we wont ever move forward. He apologised for the different opinions and has told us he will write to the clinic asking for a full details on the findings and suggesting that they inform us and Hugo痴 other doctors why they feel so strongly against Hugo eating/drinking.
Hugo痴 ENT consultant has been involved in his care since he was a couple of weeks old. It was this particular doctor who thankfully stopped Hugo having a tracheotomy, so we value his opinion and take on board all that he recommends to us.
From now on he will only see us if there is a reason or issue that needs to be looked into, he is happy with how Hugo is progressing and will obviously become involved in his care if needed but we will not have to attended regular clinic. This is great news for us.
After leaving the appointment we had organised to meet with John the Chaplin at GOSH. It was wonderful to see him and we sat and had a cup of tea with him in the chapel. We were having a lovely chat and catch up when Hugo decided to surprise us all with a vomit!! It all happened quite suddenly and poor Hugo was very unsettled by it. Unfortunately our suction unit decided to run out of battery very quickly? Not sure why as it is always on charge, luckily John (Chaplin) was able to pop up to the ward and get us a lead to charge it up and we sat for another half an hour while Hugo (who had fallen asleep) settled and we charged the suction. So thanks again John for saving the day!!!
Thankfully once Hugo was in the car he woke and was much better and seemed much happier, and we managed a problem free journey home.
On Monday 26th April Hugo saw his physiotherapist, she is pleased with his progress, he was a little show off for her and as soon as she arrived he decided to back crawl over to her, roll onto his tummy and pull himself into her lap!! As you can imagine she was very impressed by this. He also did two small shuffles forward on his front which was good progress too.
Later in the day we had an audiology appointment for Hugo to have a hearing test, unfortunately I forgot his right hearing aid - not a good start! Hugo was very good though. We could not do left sided responses, because of his lack of vision he does not respond on that side even with the left hearing aid. However he responded very well on the right side (yes even without his hearing aid) It is more a visual response with the left sided hearing, its all a bit complicated with Hugo!! Anyway he responded well for about four goes then got wise to the test and started to look at the jumping monkey. At the same time he had realised that we were clapping him each time he looked at the noise, so now Hugo is clapping himself each time he got it right, we can稚 help but laugh at his clever little game and so his hearing test was stopped due to him ？earching？for the noise. All very high tech eh!!!
Hugo is currently hearing around 50-60 decibels with his hearing aid in. ideally should be around 30DB, so not great, but the plan is to keep going as we are for now.
They took another mould of both his ears and they are planning on a different way of trying the mould in his right ear to fit it better.
After leaving audiology we took Hugo into the children痴 unit to get him checked over, he still has a rash over his arms, legs and face. (he has had this since before he was admitted back in March) Its definitely not eczema which is good news and we just have to keep putting cream on every day.
Wednesday 5th May, was Hugo痴 cardiac review at Hinchingbrooke Hospital with one of the GOS cardiologist痴.
A quick re cap on Hugo痴 heart condition and repair.
Hugo痴 heart condition is Tetralogy of Fallot with pulmonary atresia and ventricle septical defect. His pulmonary valve was completely blocked stopping blood from flowing to the pulmonary artery into the lungs, he also had four holes in his heart, one very large one between the right and left ventricle and three smaller ones.
When they did his full repair they cut the valve open and put a patch over it to allow the blood to flow properly. They repaired the holes as best as possible only having to leave a very small one open. Because of how his repair was done on the valve he now suffers with pulmonary regurgitation. This means that the blood should be flowing directly into the pulmonary artery and through to the lungs. However because of the patch, Hugo痴 blood also flows back from the pulmonary artery into the right ventricle of his heart. This repair was always a short term solution, he will eventually need to have the valve replaced.
Unfortunately our usual cardiologist could not make the appointment but to our delight the replacement was one of the cardiologist痴 who had spent some time with Hugo when he needed his second operation. He knows Hugo well and was pleased to see how much he has grown.
He asked us first if we had any concerns. Before Hugo became ill back in March and was admitted we had noticed that some of his chest veins were standing out more, we had mentioned this to Hugo痴 cardiologist who felt they could be veins trying to re-route from where he had to have so many lines in when he was so poorly in GOSH.
Since then they have become more noticeable and in the last few weeks he has begun to have very prominent veins showing up on his neck, we mentioned all of this.
After a check over, he listened to his chest, checked his liver and felt the veins, then he did Hugo痴 Echo. After also doing a scan on his neck veins he had a chat with us about Hugo.
Hugo痴 heart is working well and he is happy with how things are looking, however the regurgitation has increased slightly and because of this the right ventricle has become very slightly more enlarged. The veins in his neck are more open because there is a greater blood flow going to them. This does need to be monitored.
He wants to increase Hugo痴 diuretics, this is manly to help keep his fluid retention down and also allow him to have a bit of extra energy as we have also noticed that at times he does pant a bit and become out of breath. His Cardiologist wants him to be able to start crawling (still not there) and doing other activities without getting out of breath and too tired which would put pressure on his heart.
Although this is to be expected with Hugo痴 heart condition, it is slightly sooner than we had expected. We had always known that he would need to have his valve replaced and our Cardiologist at GOSH had told us that best case scenario would be ten years old and worst case age three, we are looking at possibly four or five. They will not allow Hugo痴 right ventricle to become too enlarged as this could lead to heart failure in adulthood, so once he starts to get too much regurgitation then they will think about replacing the valve.
He is happy with Hugo痴 overall progress and how bright and alert he is, also compared to the colour he used to be, he was highly impressed with his skin colour and glad to not see the blue/grey boy that he used to be!!
We said our goodbyes and said how lovely it was to see him and left the hospital (after picking up Hugo痴 new ear moulds)
By the time I got outside I was shaking and feeling sick. It breaks my heart to think any further ahead than now. I try with all my might not to think about the future and what may or may not happen. It is the only way to keep going and keep my ？hin up？
John and I had a hug and then discussed the appointment. We try to stay upbeat and not let it get to us, but it is hard and we can稚 help worrying about Hugo and his future. We are disappointed that he is already showing signs of RV enlargement, although as always are so thankful that we have the experts opinion and in our eyes the best looking over him. One thing we were told was that we are now in the summer months and that if Hugo can stay well over the next few months it is good for him. Obviously each time he becomes ill with a cold or bug it puts pressure on his heart so the stronger he stays the better and we will do all we can to make sure he is well.
Wednesday night John and I sat down together and had a large glass of wine each (wow not done that for a long time!!) put some music on and just talked about our wonderful little boy. I had a good cry and felt better for it, I don稚 see the point in bottling things up and I am so lucky to have such a caring and wonderful husband who is always my shoulder to cry on or the boost I need to pick me back up. I probably don稚 always tell him enough, but I love him to bits.
Thursday Hugo woke with his right retina fully dilated?? As we were at GOSH for ophthalmology we decided to see what they said rather than contacting HB.
Friday 7th we were again in London, our first appointment was at 1.40pm, so we left home at 10am. We got to GOSH by 12.30pm which was a great run.
When we were in GOSH we bought Hugo a cheap buggy with a car seat for pushing him around. We have never really used it since coming home and while sorting some bits to move we decided to take it with us and give it to Ladybird ward where Hugo spent so long, hopefully other parents will make use of it when they are in with their little ones. We took it up and they were delighted with it, but more delighted to see our little boy. We were lucky enough to see lots of the nurse痴 who cared for Hugo and some of them have not seen him since we left. Typically he showed off blowing raspberries and smiling for all, He really did make us proud!
Unfortunately our appointment did not go so well, Hugo fell asleep just before the appointment as he had not slept all day and it was ridiculously hot. To our dismay it was not an appointment to see the head consultant but a routine eye test to check his vision, the same as we had locally only three weeks ago!! Not amused!
We got into see the eye doctor and we explained about his eye, he was not really concerned and just did some eye checks, waking Hugo up in the process. He then said we needed to come back and see the consultant about having the eye surgery and when we explained that we were unhappy with the idea of it, he basically cast aside our concerns and said that there was no hope of vision in the left eye. We asked some more about the surgery and are led to believe that they would put a shield over Hugo痴 left eye which would encourage the eye socket to grow. However it would mean a general anaesthetic to do the initial surgery and then he would need a new shield putting in every 6-8 months, again requiring a GA. This would continue until he was around ten. John and I both feel strongly that although this would make Hugo痴 face look more symmetrical, he really has enough to deal with on a day to day basis without having to have more surgery and discomfort. We are now having to ask the opinions of Hugo痴 Paediatrician and Cardiologist.We left feeling quite annoyed at the way the appointment was dealt with and that we have travelled Hugo all the way down to London when he really didn稚 need to be seen.
Hugo was very clingy with John and didn稚 quite seem himself, we assumed this was because he was tired and not in his usual routine.
After leaving the hospital we met up with Matt, Keeley and Betty who were all looking very well. We went for a coffee and catch up and it was great to see them all.We left London and were home by about 8.30pm.
Saturday morning Hugo woke at 6am with a very rattly cough and a lot of secretions in his upper airway. He was pale and had a high temperature and the pupil in his right eye was still dilated. He only managed 75mls of his first feed and we decided to ring our local GP to try and get an appointment as we felt that we should use them instead of taking him down to the hospital. They were closed except for emergency痴 and I couldn稚 get through, so we decided to see how he went. At 2pm he had got no better so I rang through to Holly ward who said they would get the doctor to ring us back.
Five minutes later Hugo痴 paediatrician rang back (she was on call) I went over how he was and she suggested that we bring him in for a check.
We got in at 4pm, temp still high, but the little monkey literally took one look at the nurse and started to laugh and jump around in his cot as if nothing was up!! Obviously we were pleased to see this, but worried we were wasting the doctors time.
Hugo was fully checked over, his chest was all clear apart from the upper airway secretions, his throat was red and enlarged, but she was concerned about his eye. Although he is showing no other signs of neurological problems there is a concern as to why the pupil has become so enlarged. She is going to speak to his ophthalmologist on Monday morning and see what she thinks it could be, but there is a chance he may need an MRI scan to check that his brain is ok.
We left with antibiotics and got home by 7pm, as soon as we arrived Hugo痴 tummy became very upset so we started the antibiotics straight away. He remained unsettled and eventually went to bed at 8.30pm, I followed suit as it had been a long couple of days and I was also very tired. John was due to work but decided a the very last minute that he really didn稚 want to risk leaving me at home with Hugo being unwell. I woke at 11pm to put on Hugo痴 feed and was very surprised to find John still at home!
Hugo has managed through the weekend and is a bit better but still not 100%, hopefully once he has had the course of antibiotics he will start to feel better. His eye has returned to normal, we are uncertain as to why the pupil dilated like it did, and we are just to keep a close eye on him (excuse the pun!!) they wont do an MRI just yet unless he shows any other signs of problems.
9/05: Hugo still not right, coughing quite a bit and has lots of upper airway secretions, which make him sound like a purring pussy cat!
Lots of calpol dosing today and just taking it a bit easy with him.
10/05: Hugo slept until 7am and seems a bit brighter today, although he is very pale. He still sounds very congested and has been having calpol again all through the day. Main thing is that his eye has returned to normal and when his paediatrician phoned she discussed what to do next, for now we are not going to do and MRI. She is happy we started antibiotics and we decided to just wait and see how he goes.
11/05: Hugo is very clingy today, he is still not 100% and still congested. We had a dentist appointment first thing, the dentist is happy to see Hugo with some teeth. However she has warned us to be very careful with him because of him not eating/drinking he has a high chance of tooth decay! Apparently the mouth can become very dry and this can cause tooth decay leading to infection and possible Endocarditis This is something we have to be careful with as it can effect the heart and we already know because of his heart condition that Hugo is at risk of Endocarditis. So another thing to add to the ever growing list of things to watch with Hugo!
We had a lovely visit from Di and Anne today which was great and as always Hugo was very pleased to see his two Nana’s!
12/05: We have had our report back from GOS in regard to Hugo’s visit to the neurology dyspaghia clinic. The overall report is very good and detailed and for all of the annoyance we have had regarding the should we/shouldn’t we feed him issues, they seemed to listen to us very carefully. What she has detailed is that in her opinion and that of the speech and language therapist, they feel Hugo can continue having small sips of water (not allowed to freely drink from the bottle) and in their opinion try him with a sippy cup rather than the bottle. They also feel we can give him very small tastes of puree, but not establish proper feeding.
John and I still very much disagree on this. Hugo still shows no signs of aspirating (swallowing into his lungs) he remains chest infection free, he protects his airway when he vomits and does not cough when swallowing water. The one thing that we are very pleased with from the report was her suggestion that Hugo re-start all reflux medication. He has had almost no vomiting since he went back onto the meds and there is a noticeable difference in his feeding.
However we are going to continue to go slowly with him, we have now re-started him to drink from his bottle and we are starting to introduce small tastes of food. Hugo is really wanting to copy us with eating and we have been trying to sit him down with us when we eat to get him into the idea of the social side of eating.
13/05: Hugo finished his antibiotics today, fingers crossed he remains well!! He has done some really good tasting today with some apple puree, he was really interested in eating it and had a good 10 small dips of the puree.
14/05: Hugo’s hearing teacher came in this morning, he is as usual really pleased with the progress Hugo is making. His new hearing aid has arrived, but again is no use and we are going to have to get another mould done again. We have also been given a couple of basic signs to teach Hugo, got to try and get the hang of that then!
15-16/05: Great weekend, lovely weather and Hugo was a really good boy. Saturday we had a good walk and stopped off at the local pub/restaurant for a nice Latte. Saturday night after putting Hugo to bed I went for a sleep as I now do on a Saturday night. I managed to set my alarm clock wrong and instead of waking up to put his feed on at 11pm, I was woken by his heart rate monitor beeping at 12.15am, buggar! Quickly jumped up and got his feed on, didn’t get back to bed until 2am. Hugo’s heart rate was quite low at 62bpm so will mention that at his next hospital visit. I am also worried that Hugo is not gaining weight again. His arms feel really boney and his clothes are seeming to be a bit baggy again, also his nappies are needing to be done up quite tight.
17/05: had a visit today from two Sense workers. The idea of the visit was to give us some advice and support for Hugo because of his multi sensory issues (visual and hearing impairments). The meeting was a brilliant success, one of the two has a lot of experience in CHARGE and had some brilliant imput for us.
They thought Hugo was brilliant, however the poor little boy had woken from a sleep quite bright and full of beans, out of nowhere he suddenly became very pale, flaked out and started to pant slightly, temperture had risen so I gave him some calpol. The visit came to an end, but Hugo remained not right for the rest of the day.
18/05: Easy day, Hugo still not himself so took it easy at home. Late pm Hugo has a very upset tummy?
19/05: Hugo had his first hair cut today! He didn’t seem too impressed by it though!! Although he found Maxine, who cut his hair, lovely and he kept putting his arms out for a cuddle! Had a doctors appointment and got the GP to check him over, all sounds ok on his chest, temp is back down, but they took a sample of his stool to check all is ok.
Late afternoon I sat outside with Hugo, it was the first time I have sat on the grass with him and he was really feeling the grass with his hand.
Tummy still bad, also has a red and inflamed stoma site again, so ended up ringing Hinchingbrooke who are going to prescribe some ointment for it.
20/05: Hugo seems much brighter today, still got an upset tummy but fine in himself, temp still a little on the high side but he is ok. We popped down to get his cream for the stoma site which again seems a bit better, but going to put cream on regardless. While in Huntingdon we went for a take away coffee and took Hugo for a walk round with us. It was a nice hour and he was really good, we even stopped at Clarks and bought Hugo his first pair of shoes!!!
Hugo seems to be finding the heat a bit of hard work and he is panting quite a bit and drinking lots of water, so we are having to watch him a bit, we don’t want him to overload on fluid!
21/05: Another hot day, just took it easy, trying to keep Hugo out of the sun and at the same time enjoy it!! Hugo is much more himself today.
22-23/05: A good weekend, still been very hot and again making sure Hugo doesn’t struggle too much in the heat. He is a lot better, tummy now settled and just about back to normal. Saturday was a good day, Hugo has been able to go outside in his walker and he loves it as he has lots of open space to whiz around. John was working Saturday night and I went to bed for a sleep before his last feed and managed to sleep through my alarm and not get his feed on until after midnight so a very late night for me! Sunday Hugo was on top form! We had a family get together at my Nana and Grandad’s with all of the family there. It is the first time we have taken him out in a big group of people, but the weather was great, we were sitting outside and everyone was bug free so we were able to do it without having to worry, I am very grateful for everyone letting me know that they were all well - it makes it all a bit less stressful our end, and we relaxed and enjoyed the day. Hugo was a little star and so well behaved, he loved spending time around his older big cousin’s and they were all so very good at playing with him and looking after him. We didn’t leave until about 7.30pm, it was such a brilliant day. We got Hugo home and he went straight to bed - happy, but tired after his busy day.
24/05: I was up bright and early this morning, not that I minded, it was the last ever episode of LOST on television and sky were showing it at 5am - the one and only time I don’t mind Hugo waking me early!! Hugo had an ear mould fitting this morning, all good. Easy day and Hugo fine and well.
25/05: Check up with Hugo’s Paediatrician and dietician. Hugo’s weight has unfortunately gone down again! He is now back down to 8.5kg, we now need to try and increase his feeds, I don’t feel this will be too hard as he is tolerating feeds so well. The aim is to go up by 5mls per feed initially and then try and add a little more steadily as we can. it’s a shame as we were just starting to run the rate down a little and increase how fast his feed runs but small steps as always.
Dr D is happy with how Hugo is doing, we mentioned the little de-sat and she wants to just see how he goes and monitor him for now, if they continue she will get a tape of his night time monitoring and see what happens. She is thinking that it could well be respiratory not heart related due to it just being saturation and no change in his heart rate, he is also showing no other breathing problems so that’s a good thing. She is very happy with how he looks, how his stoma is and how his chest sounds, he has had a full blood taken to just check all his levels.
Dr D phoned late afternoon with all of his blood results, everything is brilliant, all levels are good and we even managed to get a parathyroid hormone blood which was also good so Hugo can continue to remain off his medication for the parathyroid gland.
26/05: Another busy day in the Reece household, home visits today from Visual impairment teacher, physiotherapist and his portage worker. I am today a bit fed up with all the visits, appointments and day to day life of having so many people involved in Hugo’s care. All went well, his VI teacher is very happy, she is now retiring and leaving so we met our new VI teacher today. Physio went well and she is again very happy with Hugo’s progress. Then late afternoon the community nurse from nutricia (who supply all of Hugo’s feeding equipment) pooped in to show us the new portable feeding pump holder. Such a long and busy day.
27/05: Appointment at Hinchingbrooke to see the opthalmologist. Hugo responded really well to the card test’s today, an improvement on his last appointment, which is great. Saw his consultant, she is very happy with the progress of his right eye and feels that he is using it very well. Discussions on why he had the problem with his right pupil dilating the other week. The feeling is that because of his bulbar palsy affecting the cranial nerves it is quite possible that it had a temporary problem which rectified itself. She doesn’t want to do an MRI yet and wants to see that it doesn’t happen again.
The community nurse bought round a new lead for our heart rate monitor as ours seemed to pack up first thing this morning.
Today we have been left hospital for exactly one year - such a big acheivement and to us a milestone in Hugo’s development. To think we have only had one re-admission is something to be very proud of.
28/05: Hugo woke at 7.40am!!!! It seems that the lead to our monitor was the problem and possibly not Hugo!! The monitor didn’t go off once overnight, he kept 100% sats and although still having very low heart rate, we had no issues or problems at all overnight!
Had another busy morning, John had to go to hospital today so we drove him there and then popped into town while he was being seen. Spent some good time outside in the garden today with Hugo in his activity station as happy as larry. He refused to go to bed tonight until after 8.30pm so we didn’t eat till late!
29-30/05: Hugo has been very unsettled all of Saturday, he is wanting to be picked up and a bit clingy. He had a temp of 37.9 so have given him calpol and he had a good sleep which seemed to perk him up.
Sunday he was much brighter.
31/05: Today has been a fantastic day, we have had Nick, Sue, Daniel and Luke Barrand here for the day with John and Rosemary Enever. As you may know, we met the Barrand family in GOSH with their darling daughter Olivia, who sadly passed away last September, we have not seen them since before Olivia died and had yet to meet Luke. John you will remember works at GOSH as one of the hospital Chaplin’s, he Christened Hugo for us. It was great to meet his lovely wife Rosemary.
It was so lovely to meet Luke, and see all the family again, Daniel has grown up so much and it was great to see Nick and Sue looking so very well. We should have also had the Stacey family here too but they could not make it.
We did a BBQ and the day was full of fun and laughter, we talked lots, had a laugh and just enjoyed the company. It was brilliant to see Sue again and we had lots of hugs and talked so much. It was also lovely to talk about Olivia and share some lovely memories of her. Daniel was brilliant with Hugo, trying to push him round in his walker - which Hugo loved! Hugo thought his new big friend was brilliant too.
It was great John and Rosemary could also come, John was a big support for all of us while in GOSH and it was lovely to be able to welcome him and his wife into our home. The day just went far too quick.
05-06/06: Another busy weekend, It is another hot week and Hugo is struggling with the heat, we tried a walk up to the park but came back as it was too humid for him. John has put Hugo’s swing up now so he was playing in that and loved it. Had a very unsettled sleep overnight, Hugo’s feed didn’t finish until 1am then he was unsettled so I didn’t get to bed until after 2.30am. Sunday Hugo actually ate half a small pot of baby yoghurt all to himself! Big step!! Had a visit from Sue and Phil and as always Hugo completely showed off for his visitors!
07/06: A day out to see Hugo’s two Nana’s in Aylesbury, Di and Anne were so pleased to see their boy. Hugo was brilliant, we had an appointment at the hospital on the way for Hugo’s hearing aids to be turned up slightly, he was fine with that and didn’t worry about the slight increase in sound. We got to D&A’s at 3pm and Hugo had a feed first and then we went out into the garden. Hugo was brilliant, we did some lovely photos of him and then of him with his Nana’s. Hugo also had some more puree and actually ate quite a bit of it again. He has just been so good again, and loving all the attention he got, especially after Michael and Karen arrived and he loved Michael! We didn’t leave the cottage until 9pm but unfortunately we had a bad journey home and didn’t get back until 12.30am! Thankfully Hugo slept all the way home and went to his bed as soon as we got in.
08/06: All very tired today, had an easy day at home.
09/06: Another easy day at home, still feeling a bit tired out still. I managed to connect Hugo’s feed earlier and then forget to start it! He was asleep and I had to pop out, John thought I had stopped the feed and I thought he had too so we didn’t notice until later!! However, Hugo then took a good portion of puree so he showed that he must have been hungry which is a good sign and ate it really well. I topped up his other feeds and we managed to get enough fluid into him to make up for the missed one!
10/06: I am struggling today, very teary and feeling very low. We had another visit from one of the Sense workers and she had lots of info for us, including some respite ideas for us, we are going to have a good think about them. One option is home help with cleaning, ironing, general duties to help out when we are struggling with Hugo. There is also the option of caring for Hugo if we want a break (not too keen on that idea) or just someone to come and learn how to care for Hugo in case one of us was ever ill and needed help with Hugo. We really don’t like the idea of someone coming in to help us out, but at the same time find that we are becoming more tired and run down and don’t want to burn out. We will look into it. Hugo has been brilliant today as always and full of beans.
11/06: Hugo has tolerated an increase again in feed and is now up to 130mls per feed. His hearing teacher came in this morning and had a good play with some noisy toys, he is again very happy with Hugo and feels he is the best he has ever seen him. He has made a big amount of progress since the last time he came in. We also had a visit from the play specialist at Hinchingbrooke hospital. She bought us a magazine of special needs equipment as we are looking at some new toys and equipment Hugo needs.
John is working tonight and I am feeling like I have a cold and very tired, I put Hugo to bed and then had a little sleep before his last feed at 12am!
12-13/06: Very long weekend, I have really struggled with feeling poorly. Hugo has been a star and is very good and well behaved for his mummy. He has been playing well, tolerated all feeds and just been on great form. I have slept when Hugo slept this weekend and my little boy has just been such a star for his Mummy.
14/06: Hugo actually crawled today for the first time on all fours!!! Such an amazing day and a huge achievement for us all. He crawled across the dining room floor out into the hall and then rolled over onto his back and back shuffled the rest of the way, but what a great start!!
I am still not feeling great today, but better, Hugo has been full of beans again, playing lots and just very active.
15/06: Hugo woke this morning at 5.10am! Little rascal, he then got in my bed and thankfully fell back to sleep until 8am!
We have had a wonderful day out today, mine, John and Hugo’s first one alone since we were at Center Parcs back in January. We headed to the Norfolk coast and had a day of pure heaven. We started off in Hunstanton and walked along the beach front with Hugo in his pram, we then went for a little walk into the town before heading further in land to Thornham where we stopped at the Orange Tree pub for a wonderful lunch, I would strongly suggest going there - the food is fantastic and we are never let down there. John had traditional haddock and chips and I had a Sandringham burger - lovely! Hugo loved being in the garden and was very full of himself and shouting lots!
We then headed into Wells-next-the-sea where we pulled up on the front watching the world go by while Hugo had his feed, before heading up the coffee shop we use in the high street. We had coffee and a cake and then we ended our day with a walk along Wells beach, where we took Hugo down to the beach huts and took some brilliant photos. Hugo loved the sea air and you could see a lovely glow in his cheeks. It was just a perfect day and very well needed, we have not yet been to Norfolk this year and we have not felt so relaxed for such a long time. It makes me want to cry thinking about it!
Finally we left and took a lovely scenic journey home. Hugo fell asleep on the way back, all the sea air had obviously worn him out, but he loved his day.
16/06: Hugo’s new VI teacher came in today, she is very pleased with Hugo and how he is doing, he was playing brilliantly with her today and doing lots of showing off for her. He was playing well with the toys she had bought for him and he was also responding to the different games she played with him.
He fell asleep almost straight after she had left and had a good sleep, before waking and spending the day full of beans and very excitable!
17/06: Hugo has had another great day, he is crawling again and doing a lot at the moment, he is really wanting to explore his surroundings and make the most of being able to get around. We popped out in the car earlier and he loves getting into his car seat now, so much so that when I tried to lift him out he had a mini tantrum kicking his legs as he wanted to stay in it and play with his toys - brilliant!
18/06: We received the report today from our meeting with the two Sense workers, it is a great report all about Hugo and how well he is doing. Hugo has again been on top form, we are slightly worried as John now has my cold and I so hope that Hugo doesn’t come down with it too. Trying to keep all fingers crossed that he remains bug free! He has suddenly stopped taking puree??? Not sure why, but he is refusing all attempts at it and become very forceful with his no, really hope its just him being stubborn and we can continue next week?
Hugo these last few weeks has remained well and we are in our first real period of him being totally fit and well, which is really good and we are glad that he is having a good break from the antibiotics. It has also meant we can socialise a little more with people, although we still have to make sure that no one has a cold/cough or bug and we have heard a lot of chicken pox is around so being very careful with that one.
These last few weeks have again been busy and eventful - so much so that we are finding it becoming all too much. The constant stream of home and hospital visits is tiresome and a constant reminder of how un ‘normal’ day to day life is. I try very hard to not dwell on how things are with Hugo and his problems but at times its almost impossible to forget. It is becoming very difficult to continue the flow of visitors in the house and not want to tell them to buggar off and leave us alone. When you have a child you expect to have an occasional visit from the health visitor as they get bigger. With us we have a long line of different health workers continually suggesting that Hugo needs this that or the other, as much as I understand this is for his well being and future development, I also would like to just tell them to leave us alone and bring our son up our way - but we can't, and we know that, but at times its always there - Hugo isn't a healthy normal child. Hugo has special needs and will always have to have some form of special support in his life and our lives too.
Its at times like this that I realise how alone John and I are, we deal with all of this on our own, with only a little support from family and friends. People often say to me that Hugo is doing so well because of the care and attention John and I give him - that is true. They also say we cope brilliantly with everything and that we never seem to let it get to us. Well do you know what - it does get to us. John and I find it all a constant battle, its one we will never win because Hugo will always be like this. I don't expect people to feel sorry for us and we have no problem with caring for him, he is our world and we are so very lucky and grateful to have him in it.
However its not easy. Life has changed beyond all recognition, the things we used to take for granted like going to the shops or taking a day out are now carefully planned making sure people we visit are well and we have all of Hugo's equipment. Our daily routine is exactly that, a routine, we can't just decide to do something as everything works around Hugo's feeding schedule. Something as silly as bedtime, John and I have not gone to bed at the same time now since we came home with Hugo, I am always up doing the first feed and John stays awake to do Hugo's last. Don't get me wrong, we are so very glad Hugo is well enough to be at home with us and not be in hospital, but it would be nice to be on a normal time frame. Just because things all look great on the surface, it doesnt always mean that if you scratch off the top, it will be the same underneath.
My update is a little behind this month, simply because we are so busy and I just don't seem to have the time to do as much 'updating' as I used to, Hugo is on the go and needing to be watched all the time, especially with his PEG as he gets more mobile. I am also wondering if I should continue with the updates, I have had this conversation with a few of my 'followers' who want me to continue sending them, but I really don't want to bore people.
Finally, this will also be posted on the Hugo blog, I have added a few new photos and a 'day in the life of Hugo' on there, so take a look if you can
www.hugo-littlecharger.blogspot.com
Until next time...............
Hiya Moriah is Finally Here!
6 years ago
