December 23

5:15pm

Great news: Nathaniel is going to be released from the rehab center this Saturday (December 27). At that point, he’ll come to the hotel where I’ve been staying until at least January 3 so that we can get through the next set of outpatient appointments before we go home.

This of course means I have spent the bulk of the day on the phone scheduling all the outpatient appointments that need to be made.

I’m also home to pick up his respiratory therapy equipment for the hotel. They’ve made accommodations for us to ensure that Nathaniel can easily use the room. He’ll be able to do PT/OT in the fitness room if he wants.

He will still be on the feeding tube but I was able to make a January appointment with his dentist to try to adjust the dentures. And we got tentative permission that Nathaniel can have oral surgery (pulling the last of his rotten teeth) at the 3-month post-transplant point until waiting for the six-month mark they usually prefer for post-transplant patients.

Nathaniel is really excited to get out of the hospital setting. It’s a great Christmas present.

***
6:37pm

The care and feeding of a CF patient’s lungs virtually fill an entire luggage cart on their own. On the plus side the equipment had all gotten smaller and lighter than its predecessors. On the minus side we said that about Univac compared to Eniac too.  At least I’m getting my exercise.