1:43pm
I want to start with a great big thank you and a hug to everyone who’s helped us and is helping us here in the hospital. You didn’t have to help, but you did, and it means the world to us.
Nathaniel’s been cleared for pureed food, which is great because it means he can eat more than just broth and water ice. We’re not sure when that will kick in but we’re big fans.
The delusions have joined up with paranoia to make the morning interesting, but he’s napping right now. It’s all good — we’ll find our way.
Both Dr. Hadjiliadis and Dr. Rothstein — two of our favorite docs — have stopped by to see Nathaniel today. It’s the first day Dr. Rothstein has sen Nathaniel since his liver transplant and he was so happy to see the progress Nathaniel’s made.
My next step is to find someone to teach me how to use the subway, since it takes longer for me to get my car out of the hotel’s valet service than it does to take the subway to the hospital. And that doesn’t count drive time.
OK actually my next step is paperwork for the long term disability folks but the subway thing is definitely going to happen.
5:06pm
Word is that Nathaniel has been given transfer orders, so he’ll be moving out of the ICU as soon as they can find him a bed. They’re also worried that his fungal infection may be associated with the stent in his new liver, so there’s a rumor he’ll be having that out soon. He’s not going back on dialysis until tomorrow at the earliest. Today, his OT team rolled him down the hall so he could see outside the room for a bit. And Psych is going to take a close look at his meds and see what rearranging could be done. All good things!
11:04pm
OK so the stent is not coming out, the dialysis probably won’t be full-time unless his kidneys do something weird overnight, and he’s way way more coherent tonight than he was this morning. He also finally slept.
I’m exhausted but happy, and looking forward to another good day tomorrow.
One more note: The New York Times ran an opinion article called The People Holding Everyone Together Are Coming Apart (gift link) and as a full-time caregiver I can’t agree more. This job is exhausting, runs constantly, and doesn’t pay a plug nickel. We can do better, America.