Since I posted all the news this morning, and emailed all and sundry the situation has changed, and for the BETTER!
This afternoon, when I went to the hospital I was told that the ENT consultant was coming to see Max at 5pm and that they would operate. Well, I nearly fainted! J had been to see him earlier in the day, and been told that the ENT consultant would be there tomorrow, so in anticipation, J went off to get some work done so he and I could spend the day at the hospital tomorrow, so I had to call him back.
Well, the ENT guy explained that they were going to attempt to look at the blockage, attempt to insert a replacement (bigger) tube and/or depending what they found, they might have to either operate to fix a problem or operate to give him a tracheostomy (hole in the neck below the voice box for him to breathe through). The tracheostomy would obviously solve the breathing difficulties but it isn’t something they would want to do to such a small baby. They took him off some time after 6pm this evening and J and I settled in for a wait. They came out at 8pm. And the results were:
1) He coped with the procedure very well (unlike Saturday when he stopped breathing) and seemed to be stable throughout – proving he is fitter than he was on Saturday
2) They managed to get a bigger tube into his windpipe, just one size up, but without too much difficulty – unlike Saturday. A bigger tube, even with such a small difference in size, makes a huge difference to a small baby. It is still not as big as they would like and it can still get clogged, but obviously it is much much better than before
3) They could not see what the narrowing was caused by and they said that at some point he will need an operation but at the moment the longer we can wait the better – so this is the main aim
4) They will change the tube again in a few days time, with another one of the same size. Depending on how that goes, they might then try another size up after that.
5) They will consider reducing the level of morphine he is on so that he will remain heavily sedated but not paralised. He will then be able to be fed my breast milk, even if it will be by tube.
PHEW!!!!!!!!!!! We both feel so much more relieved. Obviously the problem is still there and still needs solving but every small step forward means that he is less likely to take a step back.