Health Updates

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.

1:11am

Nathaniel’s parents and brother stayed until the waiting room closed last night (around 9:30ish) and they learned that I was the only one permitted to stay overnight. At the time I’d been sleeping on a couch in the waiting room.

Since then I’ve been sitting up on yet another couch, in the waiting room of the transplant ICU floor. I’m in the new building — the Clifton Center for Medical Breakthroughs, or as everyone calls it, the Pavilion. The last time I was here for anything other the cafeteria was visiting my friend Christine, so my heart hurts a little.

Anyway, at exactly 1am I got an alert:

Penn Medicine:The patient has left the operating / procedure room. You will be notified when it is time to visit.

That seems like a good sign! So now we wait some more… check this page for more updates throughout the day.

***
2:05am

I get to see him in 10 minutes. He’s still on a breathing tube and sedated and I don’t care.

***
2:25am

I’m in his room with him and all is well. I’m going to crash out on the huge sofa in his room now and sleep

***
9:51am

Nathaniel is intubated and sedated which means he’s not breathing on his own yet (this is normal) and he’s not conscious (also normal). From everything I can tell, considering how sick he was when he came in and the fact that he had as major a surgery as someone can have less than 10 hours ago, he’s in very good shape.

***
9:43pm

I ran home this afternoon to change out laundry and deliver meds to the dogs and things like that. Nathaniel spent most of the afternoon with his brother Shawn and his mom.

I got back around 9:30 and the staff had just finished up cleaning him up, changing his blankets, and making him more comfortable. He’s opening his eyes occasionally and his face is very expressive when he wants it to be. (We knew this already but it’s good to see it anyway.) It appears that sometime before or during the surgery he chomped the hell out of his tongue to the point that it’s been actively bleeding so they have a big cotton wad in his mouth to keep him from biting down that looks like a huge stogie. I would post a picture but he’s not conscious to give consent.

I’m waiting for my DoorDash ramen order to arrive so I can eat and then get some sleep.

Here’s a photo of the sofa in his room where I’m sleeping tonight.

I’ve turned on a tv channel that is all puppies. They are napping. I look forward to napping.

12:38am

I. Um.

Nat just called and said they have a liver.

That doesn’t mean it’s going to be viable — there’s a lot of false alarms in this shit, because the first glance doesn’t always mean it’s going to work out.

But holy shit.

So I’m closing my bill at the hotel out now and going back to the hospital. Surgery will probably be around two in the afternoon, if all goes well.

I put “Get listed!” on his whiteboard under “plan for the day” this morning [technically yesterday morning]  and after we got confirmation he was listed, the docs laughed and said “you need to check that off and add Get Liver underneath” so I did.

***
9:51am

News: we’ve gotten almost no sleep, we’re still a “go” for the surgery so far, surgery is scheduled for 2pm, it’s really going to come down to how the liver looks when the surgeons can see it

***
1:26pm

We’re waiting to hear whether the liver is good. They started the donor surgery at 1pm (if they were on schedule) but they haven’t reported anything to us yet

***
5:00pm

Nathaniel went back at 4pm and the surgery is 10-12 hours. So now we wait.

9:37pm

Nathaniel is officially listed for a liver transplant.

Now we wait.

Today we set up a website (nathanielgibson.me) to communicate what all is going on so I don’t have to copy/paste a long message all over the place.

Nathaniel had another paracentesis today, draining off some of the extra goo and taking pressure off his lungs and abdomen. Right now the goal is to keep him healthy enough to have a successful transplant. He’s doing PT at least once a day and trying to sit up as much as possible to keep his lungs open and happy. Everything is complicated, but we’re celebrating the win of getting on the list because it provides the opportunity for a positive outcome.

Tomorrow I’m going home to get my flu shot and my covid booster, see a friend for dinner, and try to get some stuff done at home including laundry. I’ll be back on Sunday. Nat’s parents will be down here for at least some of the weekend. If you want to come visit Nathaniel let me know.