Month: November 2025

9:34pm

Nathaniel’s been getting a lot of visitors, which is great, because it takes his mind off being in the hospital. Shout out to Faith, Sherrilyn and Andrew, Matt and Beck, and of course Mom and Dad for giving me opportunities to catch my breath.

All his numbers are looking good and he’s definitely on the shorter side of staying in the hospital. His rehab center will be on Lombard St. once he’s released, so we’ll still be in Philly for a while.

As for me, I took some time Friday to have my hair done, then got my flu, covid, and shingles shots Friday evening. By Friday night I felt like I’d been hit by a truck, so I came back to the hotel and slept until a bit after noon today. Sometimes the body just wants nothing to do with getting up, and “we just hit the immune system with a triple whammy” is one of those times.

The most stressful part of the day has been the hotel, to be honest. The building’s boiler is on the fritz and we’ve gone almost a week without reliably hot showers. While I didn’t necessarily want to pick up and move again, I’ll be checking us out of the Residence Inn and moving a couple blocks over to the Element starting December 1 because they have hot water.

That’s all I can report tonight; I’m too tired to keep my head up any longer.

12:10am

Happy Thanksgiving!

I’ve already published why I’m thankful: For Livers.

Apologies for the fact that the whole note below was written in the mindset that it was still the 26th. I wrote too much to go fix all of it now 😉

Both yesterday and today were big, full days. Nathaniel’s much sharper and aware of where he is than he was over the weekend; it looks like the meds changes definitely helped.

Both yesterday and today he worked with PT to get walking again. He took 10 steps for a total of 27 feet early this afternoon. He can’t quite yet get himself out of a chair or a bed, but once he’s on his feet, he’s able to move around pretty steadily.

Pain Management came over yesterday and worked with Nathaniel on, well, pain management. So far the new regimen seems to be working, though his back pain (he’s got 3 absolutely trashed vertebrae in his lower back) is still present and accounted for.

Nathaniel was transferred out of the ICU today into the Transplant wing. Same building, new room number. He’s still got an amazing looking room, but now his view looks out on the city instead of over the HUP campus. And it is a beautiful view.

He got a “holiday” from dialysis today, which a) means that his numbers are good enough that he can take a holiday, and b) means that it was easier to move him down the hall to his new room.

Our friend Matt Gusler came over to visit yesterday and today he brought his wife Beck. We know both of them pretty well from pinball and we’re thrilled to see them both.

We also got news that it’s possible Nathaniel could be released from the hospital as early as next week. Honestly? I’m not holding my breath. It would be nice if he was discharged, but I’ll be surprised if he’s off oxygen and off the feeding tube and we’ve got all the edema straightened out by next Monday.

But we did learn more about the overall plan: when Nathaniel is discharged, presuming that he doesn’t need skilled nursing to handle things like tube feeds or the like, he’ll go to a rehab facility where he can continue to build strength and regain some of his activities of daily living. It’s possible he might need dialysis for a little while longer after being discharged, or it’s possible his kidneys will recover enough by then and he’ll go without.

Either way, the rehab center is a mile closer to the hotel I’m in than the hospital is, so it’ll theoretically be easier for me to get to. I say theoretically because I’m as close to center city as center city gets and nothing seems to be easy to get to from my current location, except the Dunkin Donuts I use as a landmark to spot the place. (To be fair, I’m not spending a whole lot of time in the hotel right now except to sleep, so it’s not like I’ve had a lot of time to go shopping.)

So best case scenario is that he gets discharged next Monday, spends two weeks in rehab, and then gets released before Christmas. (We’d most likely still need to stay in Philadelphia for a few more weeks for the many doctors’ visits and tests that they like to do post-transplant.)

A more realistic scenario is that he’s in the hospital another week or so, spends four weeks in rehab, and then we spend a few weeks in Philly and he comes home say, end of January.

At least I have the confidence the dogs are going to be pretty well muzzle trained by then, since I’m paying for them to be trained while they’re away at “boarding school”.

It looks to be a very Philly Christmas. And I’m OK with that, as long as the gift we’ve received keeps on giving.

More later, when I’ve slept and it’s properly turkey day.

***
11:59pm

More good news: Nathaniel is off oxygen and no longer has all the heart monitors hooked up. He is now 5000% less prone to making machines beep. Plus he has all remaining hook-ups on the same side of his body.

The team removed his last remaining abdominal drain as well, so that will no longer be a problem child.

I came home to eat thanksgiving with my family and then swung through the Gibson party on my way back to the house. It was wonderful to see everyone and I know Nathaniel wishes he could have come along as well. Who knows, maybe Christmas will work out that way instead?

His parents went down to visit him tonight while I worked on paperwork to ensure his long term disability payments keep coming. (I’m pretty confident that “not out of the hospital from the liver transplant yet” is a suitable reason for not working but you never know with insurance companies.)  I’ve still got bills to pay but getting the medical stuff in shape was a huge win.

1:43pm

I want to start with a great big thank you and a hug to everyone who’s helped us and is helping us here in the hospital. You didn’t have to help, but you did, and it means the world to us.

Nathaniel’s been cleared for pureed food, which is great because it means he can eat more than just broth and water ice. We’re not sure when that will kick in but we’re big fans.

The delusions have joined up with paranoia to make the morning interesting, but he’s napping right now.  It’s all good — we’ll find our way.

Both Dr. Hadjiliadis and Dr. Rothstein — two of our favorite docs — have stopped by to see Nathaniel today. It’s the first day Dr. Rothstein has sen Nathaniel since his liver transplant and he was so happy to see the progress Nathaniel’s made.

My next step is to find someone to teach me how to use the subway, since it takes longer for me to get my car out of the hotel’s valet service than it does to take the subway to the hospital. And that doesn’t count drive time.

OK actually my next step is paperwork for the long term disability folks but the subway thing is definitely going to happen.

5:06pm

Word is that Nathaniel has been given transfer orders, so he’ll be moving out of the ICU as soon as they can find him a bed. They’re also worried that his fungal infection may be associated with the stent in his new liver, so there’s a rumor he’ll be having that out soon. He’s not going back on dialysis until tomorrow at the earliest. Today, his OT team rolled him down the hall so he could see outside the room for a bit.  And Psych is going to take a close look at his meds and see what rearranging could be done. All good things!

11:04pm

OK so the stent is not coming out, the dialysis probably won’t be full-time unless his kidneys do something weird overnight, and he’s way way more coherent tonight than he was this morning. He also finally slept.

I’m exhausted but happy, and looking forward to another good day tomorrow.

One more note: The New York Times ran an opinion article called The People Holding Everyone Together Are Coming Apart (gift link) and as a full-time caregiver I can’t agree more. This job is exhausting, runs constantly, and doesn’t pay a plug nickel. We can do better, America.

11:38pm

The shenanigans that result from being delusional continued into the night last night, with Nathaniel ending up in special mittens at one point to prevent him from removing his IVs or his feeding tube or any of the other things that need to be attached to him right now. I read to him from 2am-4am, and that settled him down for a little while, but as soon as I stopped reading, he went back to the shenanigans.

By 7am I was done done done and despite all of the things in my head warning me that I should not be driving or for that matter walking, I managed to drive home and sleep in Pottstown for about 5 hours. Got a shower, ate some food, and made it back to the hospital in time for the back half of the football game. Nathaniel had at least lowered the intensity of the shenanigans by that point, so while I suspect that he would be mad as a wet hen that I left him in the hospital in that state, were he able to reason halfway clearly, I also suspect that were he able to reason all-the-way clearly he would’ve been glad I left.

I can’t say that the Eagles blowing a 21-0 lead against the Cowboys did anything for anyone’s mood, least of all mine.

After the game I packed up everything that was “anne sleeps here” type stuff and checked in to the Residence Inn across from City Hall for the next 38 days. I won’t be in the hotel every day — I still need to go home to do laundry and maintain the house — but this gives me somewhere to sleep where I can get away from 24 hour Nathaniel care. Because it’s not sustainable to sleep on the back of a sofa until he’s healthy enough to be discharged… and even then the hospital strongly recommends that we stay in town for a few weeks because he’ll still need almost daily appointments with the transplant docs.

It’s the first time I’ve “lived alone” since college.

The rest of this note next little bit is going to be about me.

When you’re neck-deep in alligators it’s really hard to figure out what you need. It turns out that asking for help is a skill that you have to develop and I did not.  I look around and think I don’t know, I’m up to my neck in alligators, I guess this is just how things are now. And every fiber of my Gen-X-white-girl-should-be-superman-“we don’t ask for help” being is shouting that even asking for help is something that shames me, my husband, and my family. I expect everyone to say “yeah, alligators, we’ve all got ’em, suck it up.”

So here’s me trying to be brave and say what we need.

1. Wawa gift cards.
2. Doordash gift cards.
3. Marriott gift cards.
4. People willing to spend a couple of hours sitting with Nathaniel so that I can go sit in the lobby and make phone calls or escape back to the hotel to talk to my counselor or whatever.  You have to be willing to do so even if he’s just lying there. You have to be willing to do so even if he’s delusional.
5. Someone who can come in and clean up his hair, beard, and nails. He’s been in the hospital for 6 weeks (48 days) exactly as of today and his hair and nails are getting a bit wild.
6. Someone to help me limit the time that I’m spending at the hospital. Bonus points if you’ve done this before. Help me figure out how to step away and not burn out even if “this is my job now” and “but I should always be there for him”  are true.

If you’re willing to come visit, please use the Visiting Nathaniel page to put it on the calendar.

If you’re willing to help in some of the other ways listed please check out How to Help.

Shout out to Nathaniel’s parents, who have visited as much as they’re able and also kept an eye on the house for us so that the bathroom remodelers can still get stuff done, etc.

Another shout out to the down-time slack crew who, any time i post “anyone want a side quest?” will hunt down printers, fans, glasses vendors, or any other oddities I need ASAP.

It’s after midnight so I’m going to take a shower and go to bed. I hope you all have peaceful nights not filled with alligators. We’re gonna get through this.

2:33am

Yesterday was… a lot.

One of the reasons why it’s hard to get anything done when you’re in the hospital (even as an observer/helper) is that the patient’s got a revolving door of people coming in to check on him from about 4am forward. And Nathaniel is, as the doctors all love to remind me, a complicated patient.

So they check his blood sugar like six times a day, and almost every one is followed by a shot of insulin. They pull blood cultures from two different sites once a day. They pull blood for other tests at least once a day. The ICU team does rounds up to three times a day. The transplant team stops by at least once a day. Nephrology/renal/kidneys (they keep introducing themselves differently) shows up at least once a day. Pulmonology rounds once, and the respiratory therapy techs come by three times a day for nebulizers and percussion. Physical therapy is coming around at least a couple times of week and working Nathaniel’s liver-wasted muscles.  Infectious disease has started showing up now that Nathaniel’s culturing a yeast infection in his blood.

And we owe that little yeast infection a lot, I think. If that little asshole had died during surgery, when all the patients are treated with an antifungal to prevent this scenario, then we wouldn’t have discovered that Nathaniel’s also having heart issues. So I guess we’re glad it was resistant to the meds?

The cardiologists believe that Nathaniel has broken heart syndrome , which usually strikes when someone has gone through a physically or emotionally stressful event. I want to stress here that *I* didn’t break his heart. His liver did. But generally the syndrome reverses itself over the course of about three months. So this is a bump in the road and not much more than that. Add cardiology on the list and more tests and more imaging.

Meanwhile the yeast infection is being treated with more powerful antifungals, thus all the blood tests.

Because yeast loves plastic, they had to pull Nathaniel’s central line, which means he’s not on dialysis right now. His body still isn’t producing enough urine to compensate for the extra fluids he’s still carrying around from the surgery, so he’ll be going back on dialysis in the morning. I’m not sure where the new line for the dialysis machine will go — someone mentioned the groin earlier — but i’m hoping it will be less of a stressor than having a bunch of tubes coming out of his neck did.

Near the end of the day I drove home and swapped out clothing and refilled medication bottles so I could come back for the weekend. I took some time to get some chores done that have been bothering me and I got a shower. So I’m clean and mostly warm and while the chores took longer than expected at least I got back here OK in the rain and the fog.

Since it is almost 3am I’m going to stop here and we can pick up with more adventures in the morning. Which is like an hour away now. Yay.

***
4:09pm

I don’t really have a good way to explain what it’s like when someone is having delusions. Sometimes it’s anxiety. We spent a good part of the morning discussing how he was worried about… well, everything. And not at the level of “I’m worried about the shenanigans the president is getting into” or “I’m worried about the impacts of global warming” more like “I’m worried that because I moved this cup from location A to location B an unknown assailant is going to drain our bank accounts.”

Imagine if you lived in a very small house with only one door and one window. Imagine if every person you saw through the door looked like a relative, but none of them would come in to say hello. Imagine if your window had been replaced with a one-way mirror and there were a dozen people in masks and gowns watching you through it. You’d be pretty upset! And that’s the problem with hallucinations and delusions — they feel exactly the same as real things at the time.

Plus they come and go. Sometimes the conversation is almost coherent. Sometimes it definitely is not. Sometimes he’ll string a set of words together like “I have to health tree purple bean” and I’m just like “I have no idea what you said, try again.” Other times he’ll sound absolutely with it, except for the part where the television is going to explode if the nurse opens a specific drawer in a cabinet.

Obviously, we’re not working in a vacuum of mental health care for all this, and the staff is both understanding and effective at implementing changes. There are medications for delusions and hallucinations. There are medications for anxiety. There are counseling sessions with psychologists that help to build skills during the times that the delusions aren’t coming. And all of those have helped, both Nathaniel and I, when things aren’t running the way we expect.

It’s still hard.

I could use a few days for both of us that weren’t hard.

6:07pm

It’s been a busy day! Nathaniel has seen doctors from the transplant team, the ICU team, infectious disease, pulmonology, and nephrology. He’s had two different kinds of ultrasound and a whole bunch of tubes taken out of his body.

The good news is that he’s standing well (if he can get on his feet), he’s breathing better, and he finally peed on his own. (Peeing when you’re running dialysis is a difficult thing to do!)

The “we’re watching this” news is that Nathaniel has a fungal infection near his bile duct and the team is worried it might spread. Thus all the tests, and the removal of the central line, etc.

Nathaniel wants out, so he’s pushing himself. Which is good. I’d rather someone who was fighting to escape all the time than someone lying back and accepting whatever fate brings them. But also escape attempts in the middle of the night are somewhat disruptive to one’s sleep. especially when one is sleeping on the back of a sofa.

Nathaniel’s parents came to visit again today. Tomorrow I’m going home to swap out meds and laundry again. Saturday I start sleeping at the Residence Inn, in a bed that is not a converted sofa.

For those of you considering visiting, be aware the Philadelphia marathon is running this weekend and there will be 15,000 extra people in the area, plus a ton of closed roads. You’re still welcome to come visit but I wouldn’t do it.

9:47pm

Let’s add an EKG and an ophthalmology appointment to the list of activities for the day. I’ve threatened to install a revolving door that generates electricity to the room. I think we could power the whole wing.

 

3:45pm

Nathaniel didn’t get much sleep last night due to some of the confusion that people with the ICU are prone to. (Time absolutely breaks in here, especially when you’re staring at the same walls for multiple days.)

So far today the docs have run an experiment to see if Nathaniel’s kidneys are ready to come off dialysis (they’re not) and they’ve placed a feeding tube so that he can take in nutrition 24/7 with as little effort as possible. Plus, this time they added a device that makes it harder for him to remove it in the middle of the night in his sleep. Best of all, he can still eat and drink while he’s got the feeding tube in.

Speaking of food, Nathaniel’s moving to a clear liquid diet. Prior to the transplant, he was essentially anti-food, with no appetite, little tolerance for the side effects of eating (gas, pain, etc.) and tooth problems. We can’t do much about the teeth from in here, but if we’re lucky the appetite and the food side effects will be gone, which would be a very ideal sign.

Our friend Emilia came to visit today and brought a card for him to read. He hasn’t opened it yet because he’s mostly sleeping today, but he’s looking forward to it.

Oh, and the Philadelphia Half Marathon and Philadelphia Marathon are this weekend, only a couple blocks from the hospital, so that will add some excitement or something.

Here are all the details for the 2025 Marathon Weekend in Philly

***
9:39pm

Nathaniel was feeling good enough to sit up for most of the evening. We dealt a few hands of rummy but didn’t quite play them, and we watched some tv, but didn’t quite pay attention to it. And by “didn’t quite pay attention” I mean we spent a good 10 minutes trying to figure out ESPN wasn’t showing the Monday Night game, only to realize it wasn’t Monday night.

He is still a force to be reckoned with if Jeopardy is on though.

I read him the card that Emilia bought. Thank you everyone who sent Nathaniel well-wishes, in the card or not! We both miss pinball and we miss our friends and family.

I also read him some Middlemarch, which, if you know me, is proof of my love… I hate 19th century literature. (JUST SAY WHAT YOU MEAN. IN ONE SENTENCE. NOT A  CHAPTER. I’M LOOKING AT YOU, NARRATOR.)  So far we have discovered that the younger sister in the relationship is codependently manipulating her sister and her sister is wholly oblivious to it, being too worried about whether she is pious enough. Mostly the reason I didn’t throw the book out the window is that it’s an ebook on my iPhone.

I was really worried two days ago when it seemed like Nathaniel was sliding downhill instead of improving, but he’s improved both yesterday and today… so I’m half expecting for a slight backslide tomorrow. And that’s ok! These things aren’t linear. Bonus points if things DO go well!

10:39PM

Today’s edition is mostly what I learned from others. I was away from the room for most of the day running errands.

Nathaniel was still having trouble breathing in the morning, but things did improve throughout the day. He felt a bit more short-of breath near the end of the day as well. He had a few more bits and pieces of medical equipment removed. Tomorrow they’ll reassess how his kidneys are doing and whether he needs a feeding tube. (He has requested one.)

They’ll also do things like a swallow study to make sure he’s able to safely eat and drink on his own because he’s struggling a bit right now. Understandable considering how many tubes he’s had down his throat lately.

Outside of all that, I’m working on trying to get a calendar up so folks can see when other folks are already scheduled to visit. Especially with Nathaniel being in the ICU we don’t want things to get overwhelming.

And because people have been asking, a reminder: if you want to come visit or if you want to help in a more concrete way, use the links for Visiting Nathaniel and How to Help at the top of the page. If you don’t see those two links but you do see a menu, click that and they are in the menu. (Until I hack the menu apart anyway.)

Big thanks to Nat’s parents for coming over and spending the day with him so that I could go to a medical appointment and run a bunch of errands. Yes, Nathaniel would be 100% fine if he was left alone — HUP is an excellent hospital — but he prefers company right now and whatever makes him feel safe and secure is good with me.

Physically, Nathaniel is making great progress. His liver is working as expected and his blood tests are starting to show much better numbers. His lungs look good, his incisions are healing well, and while his kidneys are still running on dialysis, the nephrologists assure me that it’s normal for a person whose kidneys were almost on dialysis due to the liver problems in the first place.

Mentally, he’s struggling with a lot of anxiety. Like “keeps thinking he can’t breathe” levels of anxiety. “panic every time the door is left open” kinds of anxiety”. “keep anne awake half the night” kinds of anxiety. Most of it appears to be centered around his breathing, which is ironic because going into the transplant his lungs were arguably tied with his heart for the healthiest part of his body award.

As we learned back on October 16th, 20-30% of patients in the ICU experience delusions, so it’s no big surprise that Nathaniel might not always be able to say where he is or what he’s doing. It’s a little more of a surprise that he’s been panicked this long because he’s afraid to cough or even breathe. We’re consulting with all the right people, but it takes time… time for them to come to his room and time for plans to be made, and time for those plans to work.

In the meantime, I’m doing my best to try to nudge the right people into the right solutions without really knowing what “right” looks like right now and then hoping that things feel better.

***
4:46pm

I took a nap, and not I’m such a spiky person.

We booked a Residence Inn through the end of December. We’ll be down at HUP at least that long based on everything the doctors have said.  Since we’re booking such a long stay, the price is much more reasonable than I expected, and since as the weather gets colder I’ll stop walking everywhere anyway, it seems like a good plan.

Psychiatry swung by and had a good talk with Nathaniel about his anxiety and what needs to be done to get it back under control, and they’ve built a plan together. So that’s good! That means we might sleep tonight!

Some updated x-rays show Nathaniel’s lungs aren’t 100% clear the way they were before his transplant… also not unusual, but a good reason to do respiratory therapy stuff. The tricky part will be motivating the highly anxious person to do the respiratory therapy stuff. I will likely lose at this battle, at least tonight.

This is your obligatory reminder to take care of yourself, because the better shape you’re in when a disaster strikes, the easier it is to handle. And at a more granular level, don’t forget to eat, sleep, and shower.

2:17pm

Just over 36 hours since Nathaniel’s transplant surgery completed. He’s off of the ventilator as of this morning and he’s talking, if mostly to say when something is uncomfortable or to answer doctors’ questions. The floor team, the transplant team, infectious disease, pulmonology, and nephrology have all been around and said that he’s on schedule if not recovering slightly faster than expected.

No food yet, and he’ll be on dialysis at least part time for a little while yet. His kidneys need time to heal up, and that’s much easier to make happen now that he’s got a working liver.

He’s coughing a lot, which is expected of anyone who had a liver transplant, but he’s also getting better at bringing things up. (His lungs have been so healthy that it’s been a while since he had a productive cough.) And of course his brain is still clearing of the anesthesia and the chemicals the liver let build up, so he’s still a bit fuzzy around the edges.

But the fact that they could get him off the ventilator already is huge, and everything else is proceeding well.