Max went for the procedure on his airway today at about 12.30. Silvs called me at about 1.30 to say that he would probably be coming out of theatre shortly, so in to the hospital I went. After a bit of waiting, we went down to recovery at about 2.15, and met Mr Daya, the ENT surgeon in the corridor on the way. His wife went into labour this morning, so naturally he was in something of a hurry, but his brief explanation of what he had found was worrying.
On the plus side, the granuloma that had formed at the bottom of his trachy a while ago had completely gone of its own accord, as we had been told it might. However, the second part of the procedure was to investigate the narrowing that had created the need for the tracheostomy in the first place. Mr Daya found that Max’s upper airway was totally closed off with wart like growths which meant it was impossible to see anything.
He said he thought it might be a condition whose name I forget, but he had taken a biopsy to test. His tone of voice led us to believe that this condition was not trivial.
We went into recovery where Max was quite distressed, and after soothing and cuddling from us both he eventually dropped off to sleep. They had actually given him a sedative before we got in there as he was so unsettled, so I imagine that helped as well! Once he was settled, we took him back up to the Freddy Hewitt ward.
I left the hospital at about 5.30pm with the intention of getting some work done. A little googling however revealed this. Papillomatosis is very possibly what Mr Daya said, and the symptoms described on that page sound very much like what Mr Daya described.
We really had hoped that the surgery today, and the gastrostomy soon to follow would mean that Max could come home once and for all, and that we could move forward. After the shunt he has been so much better, much brighter and more alert, taking an interest in his surroundings to a much greater degree than he had previously, even smiling at us on occasion.
I can’t really describe what a crashing blow it feels to have even the possibility of yet another difficult condition. The poor little chap has put up with so much.
I am sure Silvs will want to add something later, but I felt the urge to explain why and how devastated I feel.