Friday, 9:40 pm

There's not much new to tell right now, which is a good thing. Collin requires a lot less oxygen, and is breathing much easier. He is sleeping, and seems comfortable when he sleeps. When he wakes, it's a different story; he cries and is very upset. I imagine his belly is uncomfortable, and I'm sure he doesn't like having his hands restrained to the bed (so he doesn't pull off the oxygen). He also knows he's in a different place. Luckily I seem to be able to calm him down without too much difficulty, and he goes back to sleep.

Some of his medications have been changed or stopped in preparation for the Defibrotide. At this point Collin is NPO, which means he is not allowed to eat anything by mouth. This is so that his liver isn't taxed further by having to help with digestion, along with the fact that eating is probably the last thing he'd want to do with his belly being so uncomfortable. He will remain NPO for a few weeks, as this condition will take at least that long to resolve, even once the Defibrotide is started. He is still receiving the TPN (IV nutrition) at a slower rate. Luckily he shouldn't have any permanent liver damage, and I was surprised to see that his bilirubin level had gone down a smidge instead of up. He is still getting the diuretic intermittently, and he has had some really wet diapers. His belly girth (59.5 cm!) has not changed since this morning; at least it hasn't gotten any bigger. He is stable for now, and hopefully tomorrow he will be able to return "home" to his room, which luckily has so far been held for him to come back to. I feel like there is a plan in place, and I feel a lot more confident that this is going to turn out ok. And it's amazing what a short nap and a shower can do for the soul; I feel like a new person! Thank you again for all of the love and prayers that have been sent our way!