Today we were due to go to SGH (St George’s Hospital) for our second dose of chemo and also to meet the ward that will be looking after us as long as Max is on chemo. Well a possible 2 hour visit ended up being an 8 hour visit and I am exhausted. Firstly we did a trachy change and it is obvious now that this HURTS him and it HURTS LIKE HELL! We guess (and now I know) that we scratch/rub the tumour on the way down with the new tube. After that he was due a feed and fell asleep only to be disturbed by one of the doctors coming to examine him, then another doctor came and we noticed that he was recessing (ribs showing when breathing) which is a sign of bad respiration. The upshot was that they decided to do a snot test (NPA is the official name but a test for viruses of the secretions) and a chest x-ray. The x-ray showed good air in his lungs but very little air in his trachea. This means that the tumour has taken over his airway (windpipe) so much that he has very little space to breathe through. Although we have had some chemo it will probably take getting to week 8 (of 10) before the tumour will stop growing, at the moment the chemo will only slow the growth. So I am off to hospital again tomorrow to see the Paediatric ENT surgeon and/or the Paediatric ENT registrar. Unfortunately we have discovered that they are both going on holiday in August so we will then be under the care of another ENT person who doesn’t know Massimo very well and who isn’t specialised in Paediatrics. I know we will still get excellent care, however we have now met so many doctors and nurses, it would be nice to stick to some that we know already!
So this evening we have Max on the saturation monitor just to keep an eye on how well he is breathing. We are very much on tenterhooks and I don’t fancy my chances of staying out of hospital for much longer. Hopefully we will still manage to go out to celebrate Massimo’s 6 month birthday on Wednesday (a day early but J’s Mum & Step-Dad can’t make it on Thursday).