Month: January 2026

2:48pm

We have done what felt like the impossible: Nathaniel has been discharged from the hospital. He is now at the hotel with the most ridiculously large lineup of things that have to be done each day that I think I’ve ever seen and I say that as the 25-year wife of a CF patient. Whoo what an adventure.

But we’re here. Nobody’s in a hospital bed. The nurses have left for the day. We’ve got real (hotel) cable, can order whatever we want to eat, and can take hot showers for as long as we want.

Now, maybe if we’re lucky, we can pack up the drug boxes and then take a nap.

***
4:34pm

It took 2 hours and a phone call to get the meds organized and that’s just the pills, not the inhalation treatments, but we got this far.

good grief.

thank you lord for adderall, which allowed me to concentrate long enough to actually get that done.

10:36pm

I almost hesitate to post this because doing so may once again curse us, but theoretically, Nathaniel will be discharged from the hospital tomorrow and come “home” to the hotel.

The hospital spent most of the day calling me with questions, delivering supplies to the hotel, and otherwise disrupting the day. I would probably be nicer about that if they hadn’t called at 5pm to imply that they might change their mind, at which point I implied that they had better change it back right quick.

I spent most of the day at home because Myka needed a routine appointment and blood tests, so at least I got to pet my girl. I’m not sure she’s ever going to voluntarily get in the car with me again, I might note, since every time she’s left Petsmart since October 16th has involved her getting stabbed with needles and I think she’s done with it.

3:33am

Happy new year!