Month: December 2025

10:01pm

If you have some time off between now and the end of the year, please come visit Nathaniel.

While he’s gaining strength and getting around better every day, it’s not easy for him to switch between activities (playing games vs using the computer for example) or get something out of the fridge by himself. He finds his days a lot more relaxing and healing when there is someone to not just visit, but help him through the day.

It would ESPECIALLY great to have folks come see him on the 26th, because anne will be at her family’s Christmas out in Lancaster that day.

12:32am

Nathaniel is settling in to the rehab center. He had an hour and a half of occupational therapy as well as an hour and a half of physical therapy, both of which gave him a pretty good idea of what’s to come. He did a lot of leg work today and sent me a photo to share of him on the exercise bike.

Look, it’s got video!

I missed most of this because I went home to check the mail, fill my drug boxes, and drop off the laundry.

I found out that my laundry service serves a chunk of Philadelphia, so if your’e looking for a laundry service that will wash, dry, and fold your clothes within about 24 hours with good prices, check out Lessen the Loads. Or, if you’re a person who’s willing to wash someone else’s clothes, check out the same. They have been a lifesaver for us, especially when I knew I was wearing clothes but had no idea how long I’d be back at the house or when.

Anyway, back to Nathaniel: they’re having a bit of trouble getting the feeding tube to actually pump food into his gut, but that’s not unusual and he’s working through it. He’s also getting some work on his computer done, which by itself is an accomplishment because for the last year he’s bene too tired to make much progress. I suspect that over the next 12 months we’re going to find out that a lot of the problems he’s had for the last 24 months were actually his liver being a whiny little ass and now that there’s one that works things will go more smoothly.

First appointment with the liver transplant outpatient team is the 16th so we’ll learn more then!

***
9:30pm

A quick update to add that Nathaniel’s discovered none of his shoes fit because of the fluid he was/is retaining. So that’s fun.

I spent the day Christmas shopping with my sister in Lancaster and I have to say whoever invented trains to get around had it right. The Amtrak Keystone line was a comfortable ride and there is no way I could’ve spent as much time with Mary as I did if I’d had to drive the route back and forth, especially since it stared flurrying there before I left.

The NWS’s snow prediction for tonight is hovering around 3-5 inches before midnight and it hasn’t even started here in the city yet.

Now to finish my shopping so Amazon Santa isn’t late.

1:46pm

Today Nathaniel is being discharged from the hospital.

TODAY NATHANIEL IS BEING DISCHARGED FROM THE HOSPITAL.

That doesn’t mean he’s going home, mind. He’s being transferred to an “acute rehab center” a mile away, on the other side of the Schuylkill River. THIS IS STILL AMAZING PROGRESS.  SORRY FOR ALL THE YELLING, BUT I’M YELLING.

Anyway, it means we have a ton to do today and a ton of people to talk to. All the discharge stuff has to be done on this side of the river and then when we get to the location on Lombard St. we have a ton of intake stuff to do.

The average stay for someone in acute rehab is two weeks but I want to make our expectations known right away: we think he’ll be in rehab longer. He’s got eating, teeth, and food issues that still need to be resolved. (He’ll be going over to rehab with the feeding tube still in place.) He’s got a lot of strength to gain back. He’s got a lot of energy to regain and a lot of sleep to catch up on. And it’s still essentially a hospital — blood draws will be less frequent but PT and OT will be every day. While hopefully Nathaniel won’t have anything beeping at him anymore except for the feeding tube, it doesn’t necessarily mean that his stay will be quiet or peaceful. In other words, this won’t be a tuberculosis rest home, it’ll be work.

After Nathaniel’s released from acute rehab (assuming everything goes to plan, which nothing ever goes to plan) he’ll go to our fancy hotel room at the Element for a little while so that we can easily make it to transplant clinic appointments, etc.

Then we’ll go home.

I hope it’ll be a case of giving him a trip home as a just-after-New-Year’s present, but we’ll see. It’s been a wild ride so far and while we’re no longer in a place where his health can and will turn on a dime, well. If life followed expectations we wouldn’t be here in the first place.

Anyway, many things to pack. More later possibly.

***
10:13pm

Nathaniel is officially discharged from HUP and officially admitted at the rehab center. It’s a much smaller facility — only about 58 beds? — and off of South Street on the Center City side of the Schuylkill. Parking is an adventure (available at a garage that’s more than a block away). The front door is no longer the front door (but you don’t find that out until you arrive and see NOT AN ENTRANCE painted on them) so tonight it was a cold windy walk.

The facility is definitely on the older side of the ones we’ve been in, more a Silverstein building than a Clifton, if you know HUP. But it’s clean, nice-looking, and the room is a pretty good size. They provided Nathaniel with a mini-fridge for drinks and food that he eats throughout the day. They weren’t quite prepared for Nathaniel’s CF — missing the enzymes for his tube feeds and missing the 7% saline for his respiratory therapy — but they’re working through all that tonight and it should hopefully be straightened out by tomorrow.

Nathaniel and I are both overwhelmed. Big changes at this point are almost impossible to immediately process (not that they’re easy to process when you’re not in the middle of a medical crisis) so the day just felt like one more day except with new activities that include “pack all Nat’s shit in the car” and “unpack all Nat’s shit into the hotel” and “did Nat get there ok?” and “why are there so many cars between me and my goal today?”

***
11:30pm

Huh. Forgot to hit publish this morning. That explains why everyone’s been so quiet anyway.

NATHANIEL’S BEEN DISCHARGED FROM THE HOSPITAL!

 

9:43pm

Day 59 was quiet, which is good. We like quiet.

Well, except for the part of the quiet that consists of asking “Where’s [consult] and [other consult]? Aren’t they going to round today? We have questions for them,” and not getting answers.

Today was mostly trying to get small things done and for Nathaniel was sleeping on and off.  We played rummy and door dashed grocery-like items to his room.

I noticed Dr. Glaucomflecken did a video on respiratory therapists. As he points out, their skills and abilities are not well known even inside the hospital, much less outside. So here’s a little education slash entertainment for your night.

9:47 pm.
I’m fine.

I decided today was a good day to go from the hospital to the Apple Store via public transit so that I’d learn the route from center city and back. The trip went well. We got some things fixed and a few others upgraded. I walked back to the station in the cold and got on the next available train to the hospital. Got out of the train, went up the steps—

—and tripped on the top step of the first landing, skidded across that landing on my right temple, and then cursed.

I’m fine. Annoyed that I got blood on my jeans but otherwise fine.

Meanwhile, Nathaniel’s having a pretty good day. They’ve changed his tube feeds so that during the day he’ll be eating on his own and at night he’ll get “extra nutrition” which means it will be easier for him to go to the bathroom or walk around the hospital.

He’s doing well in PT and got up off the bed today much more smoothly than last week. They’re happy with his progress.

Nathaniel’s cousin Chris came to visit for a bit this afternoon, which was great. And I got his laptop fixed at the Apple Store! Also great!

Now if he just didn’t have a very-injury-prone wife he’d be in good shape.

10:24pm

Don’t skid on your head.

It’s been a bad week to say this blog is about Nathaniel. Then again, compared to Nathaniel’s health this is small potatoes and the fact that it’s worth mentioning at all is a commentary on his improved health more than on my inability to pay attention to my surroundings. (I was trying to figure out the best place to take a picture of the bridge to the hospital over the road when I failed to clear the step edge).

Back on December 1 a man named Richard came to cut Nathaniel’s hair. He works with Restore Salon Services, an organization that cuts hair for people who can’t get to a salon, including the local hospitals.

Before the haircut, this was Nathaniel:

After the haircut, his hair was short enough to back into a “man bun” but not nearly as gnarly as it was before. Plus, Richard trimmed his beard.

Restore Salon Services is a great organization and if you’re looking for someone to support this winter, they’re a good one to pick.

7:04pm

I have concluded that there’s no good way to take a photo of the amazing view we get of the city skyline from here because there’s always a window or a bathroom wall or some other reflection on the glass. I know from pinball that non-reflective glass is as expensive as hell, and it might not be as safe as the glass on these windows, so I’m not mad. It is sad though.

Matt and Beck came to visit again and that made Nathaniel very happy. Video games of many types were played and pinball stories swapped. It’s a good way to spend an afternoon and they are great people.

Meanwhile, I have declared “war” on the hospital’s inability to do anything about Nathaniel’s denture situation. His current dentures do not fit correctly. We knew that before we came in and, in fact, he was supposed to have appointments with two different specialists in october to see if he could get a full mouth of implants instead of the constant battle with dentures.

Then his liver decided to try to kill him and I canceled the appointments.

(There was a point when I thought Nathaniel was going to die where the darkest part of me thought “well at least we won’t have to pay for implants” because sometimes the human brain will do absolutely anything it can to squeeze a little dopamine out of an all-adrenaline situation.)

(I don’t think dopamine and adrenaline are friends.)

(Then again I had no idea how much of a bastard the pituitary gland is before any of this started so hey, shows what I know.)

Nathaniel and I have discussed the denture situation with various members of the hospital staff and each time we get the same answer: you can’t get help from the dentists in the HUP system unless you’re outpatient, but to get outpatient you have to be healthy enough to eat your food… which is much more difficult when you don’t have working teeth. Bonus points for the two different docs who have said “yeah we know that the pureed food diet is boring and bland but you can gain weight on that so you can get out and get your teeth checked”.

Yeah, no.

It took me three weeks of softly pushing to get a refrigerator in Nathaniel’s room so that his shakes were cold and he didn’t need to ask a nurse to go fetch one for him. (All the CF patients on the CF floor have fridges in their rooms but because Nathaniel’s not on the CF floor, he’s on the liver transplant floor, he didn’t get a fridge and he was told it’s “not floor policy” for him to have one.

I’ve learned that a lot of the time “not floor policy” either means “we don’t know who to ask” or “we don’t feel like asking”.

A few days ago we asked again and this time the (amazing) charge nurse Cece knew who to ask — the floor secretary, who also knew who to ask, and we had a fridge in a matter of hours.

Now, maybe I’ll succeed in finding someone in the HUP system to fix Nathaniel’s teeth or maybe I won’t. And I’m not afraid to start calling dentists and saying “hey can you come visit him in his hospital room?” until I find someone who will do the work. I’m not paying for dental insurance to sit around and not-use it when it’s desperately needed.

But “it’s not policy” doesn’t mean you can’t do it, and i’m not taking it as an answer. I’ve written too many policies. Hell, my motto at Vanguard was “be the first person to write it down so you get the policy you want”.

(That was a frisky little rant.)

His liver is working well and his kidneys are recovering nicely. He’s up and walking (but still having trouble with the “getting up” part) at least as far as the bathroom and back. He kicked my ass in the last hand of a game of rummy earlier, which makes me very happy because it means his brain is working well. Like everyone in his very uncomfortable position, he’s stiff and sore and his tailbone is very unhappy about being in a bed for the last 55 days. But the biggest thing holding him up is his weight and strength and solving the teeth thing feels like the right direction to move to fix it. Or at least the only direction I personally feel I could exert some influence over.

***
11:06pm

I think I forgot to tell everyone — Nathaniel got his hair cut!. He didn’t cut it as far as I thought he was going to (but then again he was a bit “confused” when he told me he was going to cut it back to the short cut he had in college). I’m planning to post the pics but I want to get his permission first since he is in a hospital gown in them.

11:24am

You may be noticing that the updates are more sporadic right now. That’s because Nathaniel’s feeling good enough to be awake most of the time most days, which means I am spending time with him and not toying with the computer. (Right now he’s doing his very best impression of “patient determined to fall out of the bed by sleeping with his head on the side rail” so I’ve got a minute to type.)

According to Transplant, Nathaniel’s current level of malnourishment and ability to eat are literally the things keeping him in the hospital. He’s done dialysis and his kidney numbers continue to improve. He’s healing as fast as his body can regarding the liver surgery — and if he was someone without all his extra complications there’s a good chance he’d be at home right now, or at least in a hotel waiting for things to heal up. His lungs are behaving well (outside a pleuritic pain that we can’t quite explain yet) and his diabetes is well managed.

He’s also down about 20lbs from when he came into the hospital. Note: he was down 30lbs, so this is an improvement. But also, when he weighed 153 he still had a lot of edema (and he still has a lot of edema today at 160lbs) so not all of that weight counts as, y’know, weight, the stuff that your body uses as fuel when it needs to.

The man is straight up bony to hug.

But putting weight on is, honestly, harder than taking weight off, and I say that as a person who’s been obese since about age 25. Not-eating, while it makes you miserable and can really screw up your metabolism, doesn’t require your stomach to be big enough to not-eat. Nathaniel’s stomach, on the other hand, has had plenty of time to shrink and just doesn’t want to be filled with anything right now. Bonus points that an over-filled stomach presses on the new liver. Double bonus points that his dentures don’t fit properly so chewing hurts like hell. Triple bonus points that the meds make food taste weird so even his favorite foods taste bitter and awful right now.

The team asked Nathaniel to get to the point that (in addition to his tube feeds) he could drink three Boost Soothe drinks (300cal) per day, and he’s struggling to do that.

And of course there are insurance complications to all of this. The hospital would very much like to have their bed back. But Medicare often does rehab in the form of “you get as much as four weeks and the point is to make sure you can go home safely even if you haven’t recovered by then”. From their standpoint if you can’t walk by the time you leave rehab, at least you should’ve worked with PT and OT long enough that we’ll know you need a wheelchair when you get to the house. The goal isn’t to fix you, the goal is to make you safe to go home.

The rehab center does nutritional rehabilitation as well, but they have baseline levels of eating that Nathaniel just isn’t hitting yet.  If the hospital were to release Nathaniel to rehab before he’s eating well enough to rehab, then when he was done rehab they’d just end up readmitting him.

***
4:39pm

Nathaniel’s walking around really well but gets winded pretty quickly. I’ve been spending the day yelling at billing departments who call even when the bills are covered.

12:50am

I was home on the 2nd and 3rd for some family chores, then came down to the city around 7:30 to check in to the Element hotel. It is very modern and as far as I can tell everything is working. (The Residence Inn was very nice for what it was, and I greatly appreciated the staff there… and also you need to have hot water if you’re going to run a hotel.)

Nathaniel had a good day. The kidney department decided to pull the line out of his neck, because they don’t expect him to need dialysis moving forward. BIG WIN and also the exact opposite of what Transplant told us two days ago so I’m just shaking my head and moving on. He spent some time with his parents, who left just before I arrived, so he didn’t have a lot of down time between visitors.

All good. More tomorrow, probably, but since it’s almost 1am I need to do some sleeping.

9:25pm

A rough day. The renal team decided that kidney improvements aren’t happening fast enough, so instead of the docs removing the line in Nathaniel’s neck, they decided he’s going back on dialysis today or tomorrow. The nutrition team decided Nathaniel has to eat 1700 calories a day to be able to have the feeding tube (when the transplant team had told him the number was only 900 calories).

The speech therapy team did clear him to eat and swallow any food he’d like, which is a plus, but nothing tastes good still, which is a minus.  And while I was busy all day with a family trip, he did get visits from Matt G and Emilia, two close friends whose company he very much enjoys.

Not a great day, but not a total loss either.