Month: December 2025

1:28pm

Welcome to our new year’s eve pajama party. Or something. I’m feeling just a bit under the weather (don’t eat the hospital cheesesteaks) and Nathaniel is being pumped full of antibiotics, so we don’t have big plans for the day.

Tomorrow the team will inject a needle through Nathaniel’s chest wall to drain some fluid that is probably left over from the liver transplant surgery, but which may be infected. If so, well, great! we found the source of the infection! but also boo! he has an infection. And if not, we keep dumping in the antibiotics and keep looking for the infection.

His breathing’s a bit better today, so that’s a good start.

More later, probably. If not, happy new year!

***
3:05pm

Hey, while you’re finishing up your year, think about becoming an organ donor. You wouldn’t be sitting here reading this blog if someone else hadn’t been willing to donate a liver to Nathaniel on what was probably the worst day of their life.

***
7:38pm

Baskin Robbins for dinner though Nathaniel’s still feeling gross when it comes to eating. We’re writing what he’s eaten on the door so the nurses don’t drive him crazy asking.

Me: well I know why you feel gross. You ate an infinite repeating decimal of milkshake.

Him: I… what?

Me: You had 1/3 of a 640 calorie milkshake, so that’s 213.333333333333… calories. Infinite calories trending toward zero is a sure way to get a stomach ache.

Him: So did you round it up to 214 calories on the door?

Me: Nah, I put 213.3 with the little bar over it to mess with the nurses.

***
8:38pm

Oh by the way, this is day 80. Thank you very much to Rodney Comegys, Brandon Service, and Steve Haberman for organizing a pinball tournament at X-Golf benefitting Nathaniel. (And thanks as always to Tony Makowski, who has been organizing all kinds of things from afar for us!) The Doordash and Marriott gift cards were much needed and we’re very grateful 🙂 The pinball community has a big heart.

11:56pm

Nathaniel is settled back into the transplant floor at HUP. We’ve retrieved all his belongings from the rehab hospital and set up all his stuff in his new room. 

Right now it’s all a story of antibiotics, since the evidence is that he has an infection, but no one is sure where. Fortunately (?), he’s also feeling more congested and short of breath than usual and this may be a case where the blood tests showed the infection entering town before the germs got the circus tents up. That could mean that this is a short visit and he gets released “home” to the hotel. 

On the other hand, most people don’t get prescribed a run of antibiotics for two or three days — taking too few antibiotics to fully kill the infection is a great way to cause drug-resistance, and the last thing we all need is another MRSA-like infection running around. (He does not, btw, have MRSA. Or a whole bunch of other things I could name and won’t.)  So taken from that standpoint I highly doubt that he’ll be released before the new year, and I’m mentally preparing myself to spend New Year’s Eve at the hospital. Most years we just play video games until the ball drops anyway, so this would just be a new location for an old tradition. 

8:27pm

Around 4pm Nathaniel learned that the rehab hospital was going to take him over to the Hospital of the University of Pennsylvania for testing. The current running theory is that he’s got a respiratory infection but no one has told him yet what the tests have revealed.

They have, however, determined that he’s being transferred back to HUP, so we’re sitting in the ER (all admissions are through the ER) waiting to see how long it takes to get a bed.

I’ll go get his stuff from the rehab hospital tomorrow.

***
11:53pm

Nathaniel is settled in his room. Unless something extra-exciting shows up in his CT scan there won’t be any decisions until rounds tomorrow morning, specifically the rounds by the CF pulmonologist team, even though the room is in Transplant’s territory.

I’m hoping to get my butt out of bed early tomorrow and make rounds. After that I’ll spend some time at the rehab hospital picking up Nathaniel’s things and moving them to the hotel room or to his new room at HUP.

On my way back into  the hotel tonight one of the valets said to me “Ma’am you live at this jawn?”

Yeah, yeah I do. And at this point I have no guess when I go home.

11:56pm

No word from the doctors on why the white blood cell count is rising and most of the labs aren’t back. Nathaniel didn’t have PT or OT because he was supposed to be discharged, so we played rummy and watched a bunch of YouTube videos.

11:42pm

We had a peaceful and quiet Christmas together yesterday. No visitors, no PT or OT for Nathaniel to do, so we watched Hogfather (a British Christmas movie based on a Terry Pratchett novel) and ate take out.

Today Nathaniel’s blood tests from yesterday came back with some anomalies, specifically a rise in his white blood counts that indicates he probably has an infection somewhere.

So discharge isn’t happening tomorrow and is now delayed until the docs know what’s up and come up with a treatment plan.

yay.

Anyway, we’re both in the city, catching up on needed sleep after a day of more excitement than planned. My train trip out to see my folks was successful but also veered from the plans. And then, just for kicks and giggles, Nature layered a “wintry mix” (ice storm, really) on top of center city that has every surface either slippery with ice, slippery from the thick layer of salt crystals the property managers put on the sidewalks, or both.

Tomorrow we start again. Sunday I hope to go home and switch cars since I really should have the one with the disability tags and the wheelchair in it anyway once Nathaniel’s discharged. The rest is still hiding behind the fog of war and will reveal itself further in the daylight.

4:47pm

I thought I was going to have to start this post with the bad news that Nathaniel wasn’t being discharged on the 27th and they’d pushed it back to the 30th.

The reason they needed to push back, they explained, was that they can’t get all his tube feed supplies put together by the 27th due to the holidays and people taking time off etc.

Nathaniel replied “then I guess I will just have to drink boosts [the nestle high calorie shakes]  until you can deliver the supplies” and stuck to that position with such stubborn ferocity that, well, that’s what we’re doing.

It probably didn’t help that I sent a sternly worded reminder to the transplant coordinator that this is”team Nathaniel” and not “team we-make-decisions-without-Nathaniel” and that a change was required. A few minutes after that was the meeting with the doctors, who up until that point had sent literally everyone but themselves in to discuss changes etc.

You can take this as a lesson in standing up for yourself at medical appointments if you wish — more people do need to learn to advocate for themselves. But if you do, also take it as a reminder that if you know your shit then you earn a place at the table with the doctors, and if you are a danger to yourself then people will make decisions without you. Nathaniel and I didn’t win the argument because we were stubborn, though that didn’t hurt. We won it because for every objection that the docs could come up with — knowing how to use the tube feeding, knowing how to adjust his insulin levels, being able to do his activities of daily living, etc. — we could prove that one or the other of us already knows it inside out and backwards, and generally it was the patient with the knowledge.

Advocacy is really proving to the doctors that you know your shit.

Nathaniel is currently enjoying a cup of hot coca and an IV bag of iron, and I am working on figuring out which items in the room can be taken out of the room today so that I don’t have to try to pack the whole room on Saturday. (Tomorrow I will do more of the same, since Friday I will be in Lancaster celebrating Christmas with the Kent clan.) It’s a better ending than I expected.

Possible updates to come, keep an eye open.

***
9:40pm

Well, we’re packing up parts of the room and bringing them back, so this is actually happening. Merry Christmas everyone!

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.

11:58pm

(well, slightly later actually but I was busy fighting with the video formatting)

In addition to puttering around in his room in a wheelchair (when he’s not tied to the feeding tube, anyway) Nathaniel is walking and taking stairs again.

This means he has all the skills necessary to walk across the driveway, up the steps onto the front porch, across the porch, and up the step into the house!

…not that he’ll be doing it tomorrow, but he could.

11:58pm

The number of boxes that Nathaniel needs to check in order to qualify as having (re)mastered the activities of daily living grows smaller each day. He took a shower today on his own (with a nurse standing by) and took care of the bulk of his own getting dressed. He’s still having trouble eating, but he’s trying new foods every day. It’s a process, and the process is working.

He will not, however, be home for Christmas. Not even hotel-home. That’s really hard but… well, there’s an alternate-universe version of me somewhere out there, probably a LOT of versions of me out there, who are planning a year of wearing black and planning funerals and doing all the things that widows do. I’m not a widow. He’s alive.

He’s alive and he’s configuring third-party game controllers to play all kinds of retro games with equipment he doesn’t even have yet, and complaining that his neck hurts (He likes to sleep sitting up and very often snoozes in the position you expect from a great uncle after thanksgiving dinner, with the chin on the chest. Not good for the neck, that position.) and ordering things he needs for the hospital and things he thinks the hospital needs, and asking for this thing to be plugged in there and that thing to be unplugged and the wires can go in the box and the instructions should be kept and all the things he does when he’s becoming more energetic.

It’s a better timeline than I dared hope. I’ll take it.

3:07pm

Well, we’ve identified the giant gap in care, and as shrewd readers have probably already predicted, it’s dental. It turns out (despite what multiple people in the hospital predicted) that University of Pennsylvania runs a dental school but that they won’t adjust Nathaniel’s dentures unless they also created the dentures.

And there is no “Penn Dental” network the way that there are dozens of doctors who’re part of Penn Medicine. Or rather, there is a Penn Family Dental group, but they also won’t adjust the dentures unless they were the ones who placed the dentures.

This is all starting to feel like a giant conspiracy by dentists and as I have very few positive experiences with dentistry in my childhood I’m about fit to be tied.

We also have a tentative date for when Nathaniel could be discharged — but no idea what the plan for post-discharge is, so I’m not going to list it here yet. So much depends on whether Nathaniel can eat.

***
11:59pm

I take it back. There are more than a few gaps in care and I’m going to make sure that the transplant coordinator hears about them. Waiting multiple days for the right CF-treating drugs, equipment, etc. is just not acceptable when everyone involved knew what Nathaniel would need literally weeks in advance. 

In other words, I’m a grouchy bear who wants to raise hell. 

But on the other hand, the hospital is addressing each thing as we bring it up, and while they’re not exactly timely they’re also doing juuuust enough to make it difficult to raise full hell, because by the time they resolve some of the issues Nathaniel could be at whatever the next step is. 

So here’s some good news: he’s beginning to walk without a walker or other support again. He’s able to move himself around in the hospital bed and he’s actually quite skilled at maneuvering a self-propelled wheelchair. He’s regaining strength in his legs, neck, and arms, and doing a lot of core work in PT and OT. And all the labs that are supposed to be good are good. 

He’s worked really hard to get this far and it’s great news all around. Even if it does mean I might be sending a strongly worded “and exactly what are you going to do to prevent this for the next patient” letter to patient advocacy. 

Not every day is going to be all good news, but we’re getting there.