All going well with test results (from the bronch over this week), we should be going home tomorrow, after three and a half long weeks.
This has been like no admission before. Where usually we come in because he is less well, and we need IVs to bring him back to his baseline to prevent further damage; or when we come in for DIOS, to restart his digestive system; or we just come in to treat a new bug; this time we leave a little beaten and bruised, still coughing, and not quite sure - who won this round?
When we came in, his lung function had dropped to 30%. At the worst point, it was 17%. To put this into perspective, if he had remained at this kind of level, we would be having discussions about lung transplantation. Yesterday he blew a 54%, which is low for him, but massively heading in the right direction.
I once wrote here about the things I worry about, and 'sudden decline' was on that list. In all likeliness, this is what we're looking at here. There is a high chance that the impact of this infection will be significant, and he will have lost lung function permenantly. So although we are heading home, we will be back even more frequently than before:
For more regular lung function tests; to discuss the bronch results and make a plan for the near future; for the doughnut of truth (CT scan); for nasal surgery in November; and most likely, more surgery to have a Portacath fitted (a permenant IV device... I will blog about this later).
He will also start on a planned IV schedule, which means that we will come in every 12 weeks, for two weeks of IV antibiotics. This is to better keep his infections at bay, instead of coming in adhoc (when he is more symptomatic, his LF drops, or he grows a new bug...). I have explained to Isaac this will not be so different, after all, this is his third lot of IV's in the last 12 months anyway, and his fourth admission - and we're told there are advantages to knowing that you're coming in, to better plan family life around hospital. Still, I'd be lying if I didn't say it was a frustrating, something we knew would most likely happen, but that we'd hoped we could put off for a few more years.
Last night we stayed up late talking about all of this. We both got tearful. Then I asked him what he was most looking forward to about getting home, and he said 'telling all my friends I've been in a coma for weeks after falling out of a plane'. I laughed, and told him I didn't think anyone would survive falling out of a plane, to which he replied; 'well, I survived this, didn't I?'.
I don't like to post 'sick pics' but despite the O2, he's peacefully sleeping in this one, and looks so handsome. My little dude.
