Friday night was very difficult. As has happened before, Max’s breathing became very laboured when asleep, and combined with his distress from teething, he really was not coping very well. We got very little sleep, and debated on several occasions throughout the night whether we should take him in to hospital. In the end we did not and when the little toad woke up he was grumpy, but breathing better than he had been over night. After a snooze in the afternoon, Max was much happier, and more or less his normal cheery self.
Saturday night we had Verna Max’s respite nurse, and when she turned up at 10.30, the wee man was still up entertaining us. Once he went to bed however, we were back more or less in the same situation, and Verna had a night very much like ours the night before. She was quite worried and spoke to the community nurses when she left in the morning. They called a little later in the morning and we agreed that we would take Max in to be reviewed. We cannot just take Max into PICU, so went in to A&E at about 3.30. We had a frustrating 3 hours or so, when we were seen by 3 different doctors who all seemed to agree that Max was not really too ill, but that maybe he should stay in for observation. They all also agreed that it was possible that he had a viral infection and that there happened to be one doing the rounds. They said however that he was not ill enough for PICU and that he should go up to the regular wards. We were quite adamant that Max would NOT go up to the regular wards – he would either go to PICU or come home as the wards are simply not equipped to look after Max properly. It eventually transpired that there were no beds on the wards and so Max was, finally, admitted to PICU at about 7.30 pm.
Once on PICU,Max went downhill very quickly and within the hour was sedated and ventilated. We got home at about 10.30 rather shocked that the day had ended the way it had. We had only gone in to have him assessed.
At some stage on Sunday night, Monday morning, Max’s trachy tube was changed for an adjustable tube that could be made a little longer, as they had begun to have trouble ventilating him (as they had done earlier in the evening) and the only way they could maintain reasonable tidal volumes was to push down on his trachy – clearly not a very practical long term measure – hence the longer tube. The new tube had an immediate benefit and he became much easier to ventilate.
Monday morning and a chest x-ray revealed that Max’s left lung had collapsed. During Monday and Tuesday, various drugs and physiotherapy were tried to re-inflate the lung, without success. Mr Daya, Max’s ENT surgeon came to see him briefly and it was agreed that he would take Max into theatre on Wednesday and perform a bronchoscopy to try and find out what was going on.
Max was wheeled into theatre at about 2.00 on Wednesday afternoon and after a quick lunch in the delightful St Georges canteen, we met Mr Daya on his way back from theatre in the PICU parents room about an hour later. All had not gone particulary smoothly. Max had arrested on the operating table and they had had to resucitate him. During the procedure thought Mr Daya found that the tumour had changed since he last had a look in June. From above, at the back of Max’s mouth, it has become softer and more moveable – he could see further down his throat – not all the way, just further. This good news was tempered by the fact that the situation at the other end of the tumour – around his trachy and where his trachea bifurcates, Mr Daya found that the whole area around his left main bronchus had completely collapsed and he wasn’t optimistic that he would regain the use of his left lung. Once finished, his trachy tube was changed back to his normal type as he has never got on very well with the adjustable type.
Once back on PICU, the little chap was beginning to wake and wriggle around, but was clearly still groggy. We left relatively early, after a long and stressful day, feeling rather knocked for six.
He had a very settled night, and spent much of the day today asleep. He is still being sedated and ventilated, although all the settings are heading in the right direction. In addition, an x-ray this morning showed that his lung is re-inflating by itself. It seems that there is a link between the adjustable length tracheostomy tube and the collapsed lung but exactly what the mechanics of this link are is a highly debatable (and debated) issue. Also it doesn’t explain why he went downhill so quickly on Sunday night, but for the time being he is getting better, and that is good enough for now.
It is highly unlikely that he will be able to take his place as guest of honour at the charity event on Saturday but we hope to see you all there and if you can’t make it, we assume that you have bought some raffle tickets! We have also decided that any nurses who wish to come along on the night will be given a special reduced entry ticket rate.