December 11

1:46pm

Today Nathaniel is being discharged from the hospital.

TODAY NATHANIEL IS BEING DISCHARGED FROM THE HOSPITAL.

That doesn’t mean he’s going home, mind. He’s being transferred to an “acute rehab center” a mile away, on the other side of the Schuylkill River. THIS IS STILL AMAZING PROGRESS.  SORRY FOR ALL THE YELLING, BUT I’M YELLING.

Anyway, it means we have a ton to do today and a ton of people to talk to. All the discharge stuff has to be done on this side of the river and then when we get to the location on Lombard St. we have a ton of intake stuff to do.

The average stay for someone in acute rehab is two weeks but I want to make our expectations known right away: we think he’ll be in rehab longer. He’s got eating, teeth, and food issues that still need to be resolved. (He’ll be going over to rehab with the feeding tube still in place.) He’s got a lot of strength to gain back. He’s got a lot of energy to regain and a lot of sleep to catch up on. And it’s still essentially a hospital — blood draws will be less frequent but PT and OT will be every day. While hopefully Nathaniel won’t have anything beeping at him anymore except for the feeding tube, it doesn’t necessarily mean that his stay will be quiet or peaceful. In other words, this won’t be a tuberculosis rest home, it’ll be work.

After Nathaniel’s released from acute rehab (assuming everything goes to plan, which nothing ever goes to plan) he’ll go to our fancy hotel room at the Element for a little while so that we can easily make it to transplant clinic appointments, etc.

Then we’ll go home.

I hope it’ll be a case of giving him a trip home as a just-after-New-Year’s present, but we’ll see. It’s been a wild ride so far and while we’re no longer in a place where his health can and will turn on a dime, well. If life followed expectations we wouldn’t be here in the first place.

Anyway, many things to pack. More later possibly.

***
10:13pm

Nathaniel is officially discharged from HUP and officially admitted at the rehab center. It’s a much smaller facility — only about 58 beds? — and off of South Street on the Center City side of the Schuylkill. Parking is an adventure (available at a garage that’s more than a block away). The front door is no longer the front door (but you don’t find that out until you arrive and see NOT AN ENTRANCE painted on them) so tonight it was a cold windy walk.

The facility is definitely on the older side of the ones we’ve been in, more a Silverstein building than a Clifton, if you know HUP. But it’s clean, nice-looking, and the room is a pretty good size. They provided Nathaniel with a mini-fridge for drinks and food that he eats throughout the day. They weren’t quite prepared for Nathaniel’s CF — missing the enzymes for his tube feeds and missing the 7% saline for his respiratory therapy — but they’re working through all that tonight and it should hopefully be straightened out by tomorrow.

Nathaniel and I are both overwhelmed. Big changes at this point are almost impossible to immediately process (not that they’re easy to process when you’re not in the middle of a medical crisis) so the day just felt like one more day except with new activities that include “pack all Nat’s shit in the car” and “unpack all Nat’s shit into the hotel” and “did Nat get there ok?” and “why are there so many cars between me and my goal today?”

***
11:30pm

Huh. Forgot to hit publish this morning. That explains why everyone’s been so quiet anyway.

NATHANIEL’S BEEN DISCHARGED FROM THE HOSPITAL!