Not bad for someone who wasn’t supposed to survive his next tracheal collapse! Herewith photo of the happy event, but first things first. On the Saturday after our last entry we had a visit from Sally and her three beautiful girls. Sally and the girls came to Max’s first birthday party on PICU so it was timely to see them again. We had a lovely, albeit noisy afternoon!
On Sunday the family came over for the birthday celebrations and once everyone got here Max decided it was a timely moment for a quick forty winks! That rather left us all at a loose end but luckily he only slept for half an hour. Granny had made a lovely chocolate cake for him and he was rather taken by the lit candles on it. He had some lovely gifts and cards and we all had a lovely afternoon. Mummy and Daddy’s birthday present arrived a few days late but it was a huge success at it is an activity table which supports Max but allows him to put pressure on his feet. Within minutes of being it it he learnt that he could push himself round and round and now rotates at quite a speed!
We have really done nothing of great note on a day to day basis but a few things have happened in the last 7 or so weeks. On Monday 7th February we took Massimo and Luca to the Aquarium with Maddy, Maz and Maddy’s grandmother. We had a lovely time looking at all the fish until suddenly the fire alarm went off. We were two floors underground and although near the fire exit were faced with rather a lot of stairs. Luckily some rather kind lads helped carry Max’s wheelchair up for us whilst Jemma carried Max and I had Luca in the papoose. After the long walk up we decided we were too tired to go back inside and start the tour all over again so we will have to plan to go again soon.
On Thursday 10th February whilst making breakfast I twisted round and sent my back into spasm. The doctor prescribed some diazepam (!) and advised me not to lift weights for a little while, easier said than done! On top of that Jemma had the beginnings of flu; we were not an able pair! Luckily Helen, who usually looks after Max on Monday nights, was available to help out for a few hours on Friday while Jemma took to her bed. Justin also worked from home in case we needed any extra muscle power. We think Helen rather enjoyed seeing Max awake and playing; she’s known him such a long time but only and always at night.
My back improved rapidly and I was back to normal by the Monday. We had another unexceptional week but on the Saturday night Justin and I were invited to the Fresh Produce Consortium’s Annual Dinner and Dance at the Savoy Hotel. Annette came to look after Max and Luca for us and Verna took over at 10 pm. Unfortunately Max was an angel but Luca refused his bottle of (breast) milk and screamed the house down in hunger until rescue arrived in the form of Mummy!
We have had a few appointments to sort Max out with his very own chair as the Jenx chair we have belongs to the Early Years Centre and also Max will outgrow it soon. We had two representatives come round with three different chairs and the occupational therapists 
have chosen one that is called a star chair. It has been ordered and should be with us soon. I do have some very bad pictures of the trial chair – bad because they show the technical bits of the chair rather than Max so we’ll show you pictures when our own chair arrives. On Friday 25th February Max had an appointment with Dr Crowley, his respiratory consultant. She was extremely pleased to see him in such good health and showing good progress from a developmental point of view. We discussed Max’s impending bronchoscopy but no date had been set at that time. She was so pleased with him that she doesn’t think she needs to see him again for 6 months.
Another meeting we have had is with Max’s assigned educational psychologist. She is lovely although (like policemen) seems very young. She is lovely though and has assessed Max and our situation extremely well. We are looking to have Max enrolled in a school, probably a special needs school, starting in February next year, once he is three. I’m assuming that he will start by going only a few hours at a time but someone at the school needs to be trained to look after him, how it all works out we shall see but we are going to start visiting a few schools in the next few months.
At the beginning of March we also met another special needs little girl who lives just down the road. She is just a couple of months younger than Max and she has a baby sister who is just 6 weeks younger than Luca. Her needs are very different to Max’s but it is nice to spend time with another family going through much the same as us. They also have a nanny and she and Jemma had actually met independently before we met the family.
At Christmas time Justin’s Dad and Mal invited us on a family ski-ing trip in March. We didn’t quite know how to reconcile wanting to go ski-ing and the problem of taking Max with us. In the end we just weren’t comfortable having Max so far from a hospital we decided it best to book him in to Christopher’s. The holiday was from the 5th-12th March. It felt very strange organising to go on holiday with one son and not the other. We had to keep reminding ourselves that it was safer for Max and that although we were sure he would miss us, 
he would be so spoilt at Christopher’s that he would have a great time. It was very difficult and although we had a lovely holiday we missed Max so much. However, Max has managed to charm everyone at Christopher’s just as he has in every hospital ward we have been to, and he had a marvellous time. We were promised photographs of the fun he had whilst he was there, but the most important thing he did, other than lots and lots of swimming and time in the sensory room, was practicing his standing in a standing frame. Apparently he did very well and managed to cope with 2 sessions of half an hour each. We have also been practising standing at home. He loves the praise he gets for it and he is getting better although we are a very long way from being able to do it on his own, he is still mastering the sitting! In fact he can sit on his own but only when he feels like it and if you aren’t entertaining him enough he pitches backwards suddenly regardless of the void that is behind him. Needless to say we are trying to teach him not to do this but he really doesn’t want to know.
On our return from holiday and a very emotional reunion with Max we had one day’s rest then a pre-op ENT appointment on the Tuesday before Max’s bronchoscopy on the Wednesday. Justin was very calm about everything but Jemma and I were rather anxious about everything, Jemma because she hasn’t experienced Max in hospital or unwell, but I have little excuse really. Max has not gone under anaesthetic in such a healthy state since he was under 6 months old and I really didn’t have any reason to be anxious. Max was in theatre for about 1 hour and 45 minutes. I/we knew that if there was a problem someone would have come to let us know but I was very relieved when they called us to the recovery room.
When we got to recovery, Max was neither on the ventilator nor on CPAP, he was just on oxygen. He was boiling hot: not only was it a hot day but they keep theatres overheated too and Max really suffers when it is too hot. He must have been in some pain, so he was rather crotchety to say the least. He had gromets inserted during surgery too so it is possible that he was also confused by his improved hearing. All in all he was not a happy bunny. Whilst trying to cuddle him to calm him down, he or we managed to get his canula caught on something and pulled out which caused even more distress! He was upset but not inconsolably, he seemed that he wanted to be left alone but he also wanted to be cuddled so he just didn’t know what to do with himself. When we wheeled him on the bed from recovery to PICU he shuffled his bum to the edge of the bed and threw his legs over the cot sides – a bid for freedom! – but luckily got no further. An hour later the nurses on PICU would have happily let us take him home however Mr Daya, the surgeon, was not. Max spent one night in hospital and we collected him the following morning.
After the op I sent an update email to Max’s various consultants and it sums everything up competently enough so here it is for you: “The whole op went well. We were told of no problems with his breathing under general or anything and when he came round in recovery he was not ventilated or on CPAP although he did need just a little oxygen for a short period.
I gather that the hardest part of the whole procedure was the fact that Max had an ear infection that we were all unaware of and that an awful lot of wax and dead skin needed to be scraped away before the gromets could be inserted.
As far as the tumour is concerned it appears that it has regressed at the top end – at the back of his throat – as Mr Daya could see Max’s tonsils (I’m not sure he’s ever seen them before – except maybe as a neonate) and just beyond them, further than he has ever seen before. He took another biopsy whilst he was there and the tumour – assuming that
is what it is – appeared less hard and more malleable than it has done in the past. Mr Daya does not think that there is an open airway.
At the other end, in the trachea, when Mr Daya removed the tracheostomy a flap of tissue and/or tumour flops forward and totally occludes the airway. This flap is currently kept aside competently by the tracheostomy tube. Beyond the flap the airway is clear and unimpeded. Mr Daya also noted that Max has nearly outgrown the bronchomalacia on his left side.
All in all the news is good and this reflects what we have seen with Max who has stayed out of hospital now for over 6 months. We are inferring from Mr Daya’s description that the tumour has not grown at the bottom end which is what used to cause the tracheal collapses. Whether or not it is any smaller I think we need an MRI scan to prove.”
What all this means in practice only time will tell, but for now things are looking stable. Max now weighs a much more reasonable 14.9 kgs and is 87 cms tall. He looks much more in proportion and his litheness makes it easier for him to move. He has made great strides developmentally in the last six months and is a very different little boy to the one that spent so much time in hospital last year.
Like all other toddlers, Max has had a couple of tumbles, mainly from his Jenx chair and he has now had his very own bruise (or two) on his cheek(s). He fell twice face first, from his chair. On each occasion after a shocked silence, Max was very tearful for what was really an incredibly short time considering the fall. Justin and I were out of the room on the first occasion but Justin watched the second fall but couldn’t reach him in time. As one of the community nurses said, he is now like all other toddlers! We are pleased that the bruising has faded although you might be able to spot it in some of the photographs!
And Luca, Max’s little brother: he is now 18 weeks old and has had all of his first lot of immunisations (Max’s were postponed due to chemo and he only finished his last summer!). He weighs about 6.35 kgs (nearly 14 lbs) and is doing very well. He has recently started tasting solids and has a fondness for sweet potato and butternut squash. Max appears to adore him and he seems to be very interested in Max.
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