Health Updates

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.

8:02pm

Update for today: it was busy! Heart stress test, abdominal CT, feeding tube placement, Mom, Dad, and Shawn visiting. Also, Nathaniel got moved back to real food so I just placed a huge Wawa order.

The “no really you are going to communicate with me or I will beat you with a stick” activity has continued.

Nathaniel will get a determination on his transplant intake probably later this week — we’re waiting on cardiology and that’s about it. After that we wait for a liver. We have no idea how long we’ll be waiting and our job is to keep him as healthy as possible until then.

One of the hardest parts? He’s acting like he’s feeling better! He’s awake. He’s starting to eat again. He’s joking with people. He’s got the names of the staff down better than I do! And by the numbers he’s in way way worse shape than he was two weeks ago when he could do none of those things!

3:52pm

I haven’t done an update over the weekend because the weekend consisted of “drink fluids”.

Monday we were told the team would swing by and tell us what’s going on and they just… didn’t.

Today was “anne pitches a fit” day. I read the resident the riot act about the lack of communication and the fact that some communicators were bypassing me, telling Nathaniel, and then he was getting his wires crossed and telling me incorrect information. Does not fly with me. When I was done with the resident I had a strongly worded conversation with the nurse coordinator about a pile of small but risky things happening with the nursing staff that needed to stop.

It helps that I was starving at the time.

Nathaniel is currently getting a paracentesis — they’re taking fluid out of his abdomen. To my knowledge he gets to rest the rest of the day, which is good because there were problems with the night nurse not knowing how his feeding tube worked that kept him up all night. (See previous “I chewed out the nurse coordinator”)

(And if any of you are worried about my temper, please be assured that I turned on my very best “Vanguard Talking to An Executive” self and everything I said was also surrounded by honest compliments to the staff and the hospital. This place has saved his life. They just also have to not break the feeding tube.)

Nathaniel is officially in the process of being evaluated for transplant. I have an entire folder of documents describing what this means so if you want more details tell me. It will probably be a little while before he has a final answer and in the meantime we have to ensure he stays alive and as healthy as possible. He is doing physical therapy, which helps, and drinking shakes from Wawa… if they can figure out what’s going on with the colon scan he’ll be able to switch back to real food right after the scan. He had an echocardiogram / heart ultrasound this morning. He’s got a heart stress test tomorrow. If there are other tests coming and there most certainly are, we just don’t know what they are yet. (See previous “chewed out the resident”).

Also, I honestly don’t know if it’s true but Nathaniel told me this morning that one of the doctors (he couldn’t say which one) told him he didn’t qualify for a living donor transplant. I’m telling all of you this because I know some of you are hoping that living donor is an option and I want to make sure you know right now that it may not be. Which is scary. But also this is the same man who told me this morning that “they want me to do a stress test which is a dry run of what the hospital will do when i come in for the transplant” and I was like “my good dude I had a stress test in march I assure you that is not what it is”. So don’t put your hopes on a living donor — but don’t rule it out 100% until I verify it.

I’m going out to dinner with a friend this evening and then crashing at the hotel again tonight. I had to relocate at 1am yesterday because my newly-renovated room’s door had just enough of a gap around it that every time the heating system turned on and blew air into the room, the door hummed like a jet engine. So that was fun. But they did give me a box of chocolates for being a Silver Elite member and with Nathaniel’s health being what it is Marriott might just make me a Lifetime Gold Elite member this calendar year because I’ll have 400 nights in marriott properties, courtesy of lots of work trips and a love for Virginia Beach.

Nathaniel’s parents are at our house because it’s much closer than Kutztown and Nathaniel’s brother is driving in from South Dakota, arriving very late tonight. I’ve got permission now to spread the word to friends and acquaintances on what the hell is going on, so communication will soon be more of a challenge. I don’t really want to set up a Caringbridge website but it might come to that for my sanity. Similarly, I don’t really want to set up a gofundme for fundraising, but that’s a conversation that I’ll be having with the transplant coordinators.

Anyway, this update is long enough. We’re still here. His numbers are not good but he’s still kicking (and screaming) to get what he needs. As long as he’s fighting, I’m fighting.

Open roads and kind fires, friends. We’ll get through this.