November 18

10:39PM

Today’s edition is mostly what I learned from others. I was away from the room for most of the day running errands.

Nathaniel was still having trouble breathing in the morning, but things did improve throughout the day. He felt a bit more short-of breath near the end of the day as well. He had a few more bits and pieces of medical equipment removed. Tomorrow they’ll reassess how his kidneys are doing and whether he needs a feeding tube. (He has requested one.)

They’ll also do things like a swallow study to make sure he’s able to safely eat and drink on his own because he’s struggling a bit right now. Understandable considering how many tubes he’s had down his throat lately.

Outside of all that, I’m working on trying to get a calendar up so folks can see when other folks are already scheduled to visit. Especially with Nathaniel being in the ICU we don’t want things to get overwhelming.

And because people have been asking, a reminder: if you want to come visit or if you want to help in a more concrete way, use the links for Visiting Nathaniel and How to Help at the top of the page. If you don’t see those two links but you do see a menu, click that and they are in the menu. (Until I hack the menu apart anyway.)

Big thanks to Nat’s parents for coming over and spending the day with him so that I could go to a medical appointment and run a bunch of errands. Yes, Nathaniel would be 100% fine if he was left alone — HUP is an excellent hospital — but he prefers company right now and whatever makes him feel safe and secure is good with me.