Day 19 Post-op

6:00pm update:

My cousin and aunt came and visited with us for a bit this evening. They got Job laughing while I signed consent for his surgery tomorrow morning.

Job got a shower today, since his PICC line is now out. Woo hoo! He smells so fresh and clean but he also loved it. He just sat there, spraying warm water over himself for about 45 minutes.

He's pretty grumpy again, if not just outright mad, so any and every distraction is a balm to both Job and I. I think it's just going to be really hard until he gets to go home. And until he's off steroids.

3:00pm update:
Today has been exhausting! (And it's not even finished yet!) Every day down on the floor has been, actually, which amuses me because to even be on the floor Job has to be doing pretty well. When he was the sickest was actually the most relaxing, at least physically speaking, because I just sat next to him and held his hand. But here I'm engaging with him or talking to providers with hardly a spare moment. Job crashed on the couch this afternoon and my plan was to nap with him but I ended up doing an extra training instead. I'm getting so many things checked off! It's a good distraction so I don't focus on my disappointment about his swallow.

12:00pm update:

Oto came by and scoped Job's vocal chords.

The left doesn't move at all and the right hardly moves.

I was holding Job in my lap, holding his arms down, and watching the scope and it was astounding how very wide the gap between his chords are. It's no wonder he's aspirating so badly and his voice is so so very faint.

It's such a dramatic problem that Oto had no problem quickly recommending we do a procedure as soon as they can fit Job into the OR - provided Transplant and Speech sign off on it.

It's devastating that this is such a problem. But it's probably also a bit vindicating because I do feel like I had to really insist Oto get involved and we not write this problem off as a cold virus.

I'm just so so sad today. I want to be grateful we caught it and most of all grateful that Job got a transplant and not begrudge intubation for "ruining" Job's swallow and voice but right now I'm struggling to let go of my bitterness.