Month: January 2026

3:25pm

The liver team discharged Nathaniel yesterday, so he’s home again! Now it’s time to dive back into getting everything cleaned up and organized.

So many meds. Somebody ought to design a toolbox specifically for this purpose. And somebody ought to force all the drug manufacturers to standardize their bottles. But since neither of those things are going to happen today, I’m making do with lots of plastic bins, post-it notes, sharpies, and painter’s tape to ensure the notes don’t come off.

They’re not the kind of thing you can claim on your HSA but they’re definitely required.

2:56pm

Well, the thingies (technical term) on the liver turned out to have been there the whole time, and in fact are smaller than they used to be, according to the Transplant Team.  On the other hand, while the CT didn’t show it particularly well, there *was* an intestinal blockage, which Nathaniel cleared yesterday.

So they want to finish out this 48-hour run of antibiotics (no point in making more superbugs) and then he’ll be coming home tomorrow.

At least that’s the plan. And I’m pretty confident we’ll be sticking to the plan, which makes today a very good day.

11:09am

Yesterday, Nathaniel had some pretty nasty abdominal pain. We headed over to Paoli Hospital and, at about 12:30 in the morning this morning they determined that it’s probably liver related. They transported Nathaniel to HUP at some ungodly hour like 5am.

I’m at home prepping to head down the city, but with hopes that this time it will be more living at home and driving back and forth than it will be sleeping on ER recliners and eating DoorDash. Who knows, I might actually get a chance to eat the food we just stocked up on.

I don’t expect to hear a full-blown plan until they have him formally admitted into the hospital. And since that’s sometimes taken days, then as long as he’s stable, we’re in a waiting game.

10:01pm

He’s gotten a room in the hospital – back at the Pavilion again – and whatever’s going on is almost definitely liver related. Hopefully tomorrow we’ll get a better idea of the situation and the plan. In the meantime he’s sleeping and I’m fretting and the dogs are following me around.

5:10 pm

We are home. Home home home home.

Well if we’re being totally honest we’ve been home about two hours, but between watching football and beginning to unpack FOURTEEN WEEKS of our belongings and accumulations this is the first time I’ve had time to reach for a keyboard.

Fourteen weeks.

98 days.

Home.

2:26pm

Today I am in the process of taking things home, because we plan to check out of the hotel on Sunday. (Nathaniel is back at the hotel with a schedule full of occupational therapy and nursing visits.)

The ERCP procedure that was keeping us in Philly has been rescheduled for late February. Since we have more doctor’s appointments near home next week than we do in the city, not much point in staying. Might as well save a few hundred dollars in hotel costs anyway

Tomorrow I will do another run of bringing things back to the house so that Sunday we can check out with only our most necessary belongings. 

Ironically, Tuesday and Wednesday we go back to the hotel because as soon as the ERCP was rescheduled and we’d planned to check out, someone decided to book more appointments in Philly for that day. Sometimes that’s just the way it goes.

Anyway, barring further disaster, we’re going home soon.

11:07pm

It’s been a day full of fatigue and sleep for Nathaniel, and slowly working my way toward working for me.

Saw this and thought it was very much where we are right now.

Happy almost-mid-January folks.

6:21pm

33 years ago today, Nathaniel and I went on our first date.

We’re celebrating by watching playoff football and grocery shopping online.

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.