Month: October 2025

5:48am

My workday consists of spending the next 24 hours explaining to my very sick husband that no he cannot get up and use the toilet, he’s in intensive care. He can use the bedpan until he can walk again.

It is surprisingly difficult to explain to someone who 36 hours ago couldn’t walk, swallow, hold a cup, or talk, that he is too sick to go to the bathroom just because he feels good enough to try

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7:08am

No dear, it is not a crowd of black ops warriors, its shift change, can we PLEASE sleep now?

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7:40am

Hallucinations are terrifying when they happen and also these are going to make great stories later

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3:49pm

The doctors have ordered me to go home and sleep there tonight because I’ve slept on a recliner (on my side, and no, the recliner doesn’t lay flat) at the hospital for 4 nights straight and even though I seem to be the anchor that keeps him connected to reality, I won’t be a very good anchor if I’m too tired to function. 4 hours of sleep a night is not sustainable.

The good news — and it is VERY good news — is that the neurological problem that was causing his muscles to randomly shut off so that he dropped things and couldn’t walk and couldn’t swallow has mostly cleared up. That means he can swallow pills, eat, drink, etc. He’s also wide awake and able to at least try to have conversations with people, which is also way better than he was a few days ago, although it comes with some caveats near the end of this post.

In other good news, the antibiotics seem to be working and with a little luck the liver will be not-infected very soon. The antibiotics are also effective against the stuff that colonizes his lungs so it’s a two-for-one deal to prevent infection.

Under the category “it is what it is”, Nathaniel’s been officially diagnosed with chronic liver disease. What does that mean? Damned if I know because we can’t determine exactly how bad his liver is without doing a biopsy and he’s not in good enough shape right now to do a biopsy. I’ve pushed pretty hard on the liver doc to make sure that we do the biopsy before we leave the hospital because we deserve to have a plan before we leave.

On the less wonderful side of things, he’s experiencing what one doc called “hyperactive delusions”. On one hand, he has trouble following conversations, which means meetings with the doctors and the nurses are very stressful because he doesn’t understand what we’re saying. On the other hand, his brain is filling him with sights and sounds that aren’t actually there. He hears voices, he sees things, and a huge amount of the time, he yells at them. For those of y’all who have been down the hospitalization road with us before you probably know how much he hates having a patient down the hall who’s constantly yelling. This trip, he is that patient.

He’s also angry, and who wouldn’t be?

Fortunately, there are treatments for all of these things and we’re applying them carefully and thoughtfully and including everyone (especially Nathaniel) in the decision-making process. We have the CF team, the endocrinology team, the diabetes team, the GI team, the liver team, the surgical team, and the psychiatry team involved and I’m sure we can get some more involved before we leave if we have to.

Anyway, that’s the report. I’m leaving here at 8pm to go home to eat a food, sleep in my own bed, get a shower in the morning, and head back here. Thank you all for reading — this is helping me keep track of what’s going on and it’s easier to get back to than notes that I’d lose on my computer.

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4:02pm

I think at this point my brain has given up on freaking out about it and is just like “well this is an odd work assignment, I guess I’ll push through.” I originally thought I’d be having a good solid meltdown on, say, Thursday, but that’s also when I thought he’d be home by Saturday.

Nat’s parents said “thank you” to me at the end of a call earlier and I’m like “I mean, I signed up for this” and they were like “no you didn’t sign up for THIS” and I guess they’re right… we started dating when I was 17 and we got married when I was 24 and you know, a whole lot of “your husband has a terminal disease” sounded more like a Lurlene Mcdaniels book in my head than it’s turned out to be

10:53am

Nathaniel is awake and he’s pissed off! He wants to go home! This is the best news I could possibly offer right now. Granted, he can’t go home and he’s going to spend the next however many days loudly reminding me that he wants to go home, but the fact that he’s yelling about it is huge.

He is having a lot of problems with words — “wrists are too strong” “bathpan” for “bedpan”, stuff like that — but hey, his brain has been in the equivalent of a deep freeze rollercoaster for the past 2 days so I’m happy with it

I do wonder if they spend enough time explaining to people who want to become nurses that essentially they’re going to be plumbers. IVs, feed pumps, suctioning someone, chest tubes, they’re all plumbing. Most of the human body is plumbing. And just like plumbers, they spend a lot of time cleaning up someone else’s sewage.

I have also found my limit, btw. I’ll help N to the toilet and back, I’ll move his bed, i’ll feed him by hand if he needs it, wipe his nose, wipe his butt, all that, but if they say “bed pan” I am right out. Running for the hills so to speak.

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4:59pm

Nat went from almost frantic this morning to all but asleep again this afternoon. The big test we were waiting for — his ammonia levels — just came back. If the docs are happy, they’ll be transferring him back out of the ICU and into a normal room. I don’t think they’ll let him walk around yet but at least there’s hope he’d get over to the CF floor.

Either way I’m taking some of his stuff home so they don’t have to move it across the hospital again and nothing gets lost.

So all in all good news!

1:32am

Me, thinking: this nurse is amazing, and so skilled!
Me: makes  a firefly reference
Nurse: I’ve never seen firefly. It was canceled before I was born
Me, in my head again: ok look, you little shit…

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6:32am

6am and I’m up watching the medical team try to draw an ammonia blood test from an artery and this is not the party to wake up to

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10:44am

Ah, the Lenovo migrations have begun. Eight or nine sets or computers just walked by with doctors in matching outfits. Winter must be almost upon us

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12:55pm

I talked to the docs during rounds. Nat’s lack-of-thyroid has gone bonkers so some of the current shenanigans are due to that. They’re consulting with his thyroid docs, his lung docs, his liver docs, and his GI docs to figure out which meds go up and which meds come down.The docs still don’t think he’s in an emergency oh-god-get-here state and if he hits that I will definitely let you know. In the meantime I’m figuring out who wants to come visit and when.

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1:41pm

I am now at the stage where it makes sense to start telling people at least a high level of what’s going on. Reached out to his parents last night and to his cousin who lives nearby today.

I had always heard that the ICU was the most peaceful part of the hospital and I believe it. We’re getting way fewer interruptions here and when someone does come in, they’re doing three or four things so that they’re not going in and out a dozen times. The staff is amazeballs and it’s the first time that a doctor has straight up invited me to participate in rounds almost as if i was a member of the staff. It sounds weird to say but I feel honored to be able to participate in his care like that

How I’m explaining this mess to other people:

This all started with a liver infection — they think that they’ve got the actual infection cleared up but for whatever reason his body isn’t bouncing back the way they’d hoped.

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8:54pm

He’s asleep most of the time and when he’s not asleep he’s so tired he’s keeping his eyes closed anyway. He’s currently doing respiratory therapy while also being fed through the nasal tube and is quite possibly asleep — which is probably more than I’ve accomplished all day. I don’t think he’s particularly happy about all the tubes and IVs and such but I’m also not confident he knows what they’re all for.

As for me, I’m trying to make sure that all the doctors understand each others’ timelines and such so that nobody gets crossed up. And I’m trying to get all my email and our bills and things done. And I’m very tired and miss the dogs, but this is where I belong right now.

10:44am

So we’ve swapped the delirium for rising liver enzymes, which is the wrong direction. Everyone’s concerned but they’re not sure why his body’s doing what it’s doing so they’re trying to give his body time to heal on its own. My job at least temporarily is to keep the parade under control and give him the support he needs to just stay where he is.

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12:48pm

Things are not right. We’re doing lots more testing and I am pulling up Dr. Google to learn what all these new terms mean

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4:41pm

They’re moving him to the ICU shortly.

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5:14pm

Every time I leave something gets worse. And they don’t know when they’re going to move him so I don’t know when it’s ok to go. I think I need to order something now but I’m scared. And he looks so much like Christine…

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9:41pm

They have not yet moved him to the ICU but oh hey he has forgotten what ammonia is so I can’t explain to him why he feels so bad in terms that are a) understandable and b) not vague. (This is not a request to help me with that. It’s a vent of frustration that he’s not able to access those memories.)

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11:41pm

We are finally in ICU proper and the staff here are the top notch. I am so incredibly lucky to leave near Philadelphia and the hospitals they have here. Not all of them are the best and HUP isn’t the best in every category, but this is light years better than it could be.

I wish all of my CF friends had been given the opportunity to be at this place in this time. I try to remember that we built on what we learned when they were patients to get us where we are today but on a night like this, there are a lot of ghosts in the halls.

10:13am
Aaaaand paranoid Nathaniel is piloting the ship again this morning. So much for my plan to sleep in.