Month: January 2026

10:29pm

We did what felt impossible: we went to a follow-up appointment for both the transplant clinic and the CF clinic in one day, along with minor satellite visits that always orbit the big ones, and nobody threatened to pitch Nathaniel back into the hospital.

His lung function is down quite dramatically based on the respiratory tests but they think that’s more muscle wasting / weakness than it is infection or poor health, so they want him to keep eating and doing PT to get stronger and stay healthy. His transplant numbers for his liver are exactly where they should be and his kidneys are even better than before all the shenanigans began. They said “keep doing what you’re doing”.

I am immensely relieved.

Tomorrow: we keep doing what we’re doing, trying to get a little better at it every day. And then we keep that up for the rest of our lives. Piece of cake, right? 🤣

 

7:03pm

We are starting to get the rhythm of after-hospitalization life. We’re still at the hotel, because it’s a nice hotel and the drive from Pottstown to Philadelphia is not as nice. Nathaniel had an appointment with both a nutritionist and a pharmacist today, and I had an appointment with my counselor and with my ENT.

Tomorrow Nathaniel has blood labs, pulmonary function tests, an appointment with the crew at the CF center, and an appointment with the crew handling outpatient liver transplants. After that, we will pick up some prescriptions and return to the hotel and collapse in a heap. That’ll be our life for a while.

1:59pm

Because nothing can ever go perfectly smoothly, we discovered last night that Nathaniel’s feeding tube had a clog in it and that had to be fixed before he could get a feed.  Thus our morning started with some hard work from a visiting nurse and then a visit to the HUP ER

Because the staff at Penn really are working their hearts out even on a Sunday in January, the line is now un-clogged. We’re currently waiting to be discharged from the ER so we can go back home and watch the Eagles.

Good thing that we’ve still got a few hours because ER teams are a lot of things but “fast” is not one of them unless you really really need them to be fast.

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!