Early Tuesday morning (29th March), Max’s night nurse told us that Max had not had a very good night. His breathing hadn’t been brilliant and his oxygen requirement had gone up from his usual 0.2 – 0.3 litres per minute to 0.8 litres per minute – which in itself isn’t a great deal of oxygen but when you consider it is nearly 4 times the normal amount he needs it is quite a significant change.
Jemma and I gave him a bath that morning and did his weekly trachy change. Nothing unusual to report but he did appear quite tired. We went off to ASDA in the late morning and put Max in a shopping trolley for the first time in his life. He looked really cute and sat really well, although he did insist on holding on for dear life every time he was pushed!
We came home at around 2 pm and Max needed a nappy change due to a rather large poo. He got really upset whilst Jemma changed him and we decided to let him have a rest in his bed. About 20 minutes later we checked up on him and he was shivering really badly. He didn’t have too much on so we warmed him up in our bed and called his community nurse. Although still shivering madly, his eyes looked glazed and although under the duvet he lay quite still when usually he kicks off any blanket in seconds. Helen asked what his temperature was and the thermometer said 36.5ºC so she told us to keep an eye on him and call back if things changed. I called Justin to tell him what was going on and he called back a few minutes later asking if we had put him on the saturation monitor to check his oxygen levels. We promptly put him on the monitor (please bear in mind that Luca had chosen 
this moment to wake up screaming and I was in a bit of a state!) and the reading was a heart rate of 220 and an oxygen level of 83%. We didn’t believe the reading especially as it settled after a little while to a heart rate more in the region of 175, which is a little more reasonable but still high. His oxygen levels though, did not improve so we turned his oxygen on and took another temperature as he seemed to be burning up, this time with a hospital one use only thermometer and it read 39.5ºC. At this point it was about 4 pm. We called Helen back and she told us to call an ambulance as she didn’t want us faffing with oxygen and everything and considering the time she thought it best if we went in by ambulance.
Max and I went by ambulance whilst Jemma and Luca waited for Justin to get home and came along shortly afterwards. The doctor in A&E gave Max a dose of paracetamol and one of ibuprofen and after 20 minutes his temperature started to come down. He was still not himself but by the time we were sent up to PICU but he was very much better. He had bestowed a few smiles on his Daddy. On PICU they tried to get intravenous access for antibiotics but although they tried stabbing him a fair few times they didn’t manage it and just started him on oral antibiotics.
Jemma picked Max up the following morning and he seemed very much himself! We went to Christopher’s on Thursday where we had a lovely day. No swimming though as we don’t have any ear plugs yet. On Saturday it was such a lovely day and, with the new car, we just all bundled in, dogs included, and went to Richmond for a walk. Although the sun was shining, it was quite windy so the walk wasn’t as long as we would have liked as we were concerned the children were getting cold, but it was lovely to be out in the park again after so long. The dogs were so surprised and happy!
On Sunday, again dogs included, we all went off to Grandpa and Mal’s for Sunday lunch. Max and Grandpa shared a wonderful moment of silly animal noises (by Grandpa) and real heartfelt giggling (by Max)! It was a lovely relaxing day only marred by the fact that both children slept in the car on the way home and then refused to sleep when they got into their own beds!
On Tuesday (5th April) we had Max’s post-operative check up with Mr Daya. Even before he looked in Max’s ears, Mr Daya asked me what I thought about Max’s communication and then proceeded to explain about speaking valves. As neither Justin nor I ever expected Max to speak, it was a real surprise! Of course we don’t know if he’ll be able to make sounds but it is exciting that the possibility is there to explore even if the results are negative!
Max’s MMR is due on Friday but, for now, that’s all folks.