Category: Liver Transplant Adventures

11:43am

N saw his CF doc this morning who essentially said “we don’t know if your liver is improving or declining so you’re staying here until we figure it out”. So I’m starting the process of trying to figure out what life looks like if N is in the hospital another month. It’s likely to be a one-day-here-one-day-home kind of thing, just so I can pay bills, make phone calls, etc. Probably not a good time for me to open up the job hunt anyway.

***
2:30pm

One of the patients just got married down the hall in the family visitation room

2:25pm

Day 14 of this adventure and Nat is feeling good enough to want clothes and his tech. To get everything to him, I had to break out the cart.

Based on a convo Nat had with the docs this morning he’s not leaving until he’s eating and doing other “activities of daily life” without his liver flaring up. So we’re guessing another week. Possibly more but I’ve guessed wrong at every turn so far so I’m not making predictions at this point.

3:44pm

A quick update: Nathaniel is up and walking around because he wants the swelling in his legs to go away. He’s also trying to eat, which is a big improvement. He understands what things he needs to be able to do to get out of here and he is working really hard at them.

I hurt my back in the recliner I slept in overnight so I’m going home to sleep in a real bed tonight.

All of this is a lot for both of us, and the fact that the doc N is now under pissed both of us off the first time we met him did not help things.

On the other hand I haven’t worked in tech for 20 years to get pushed around by a guy. So I’m not worried.

And in the meantime the hospital has been very active today, reinforcing that Nathaniel is still one of the healthiest people here except for the part of his body is trying to kill him 😉

***
8:25

I’ve lost track of which folks know what so apologies for any repeat info.

Nathaniel’s out of the ICU and we’re weaning him off of some meds while trying to figure out others. If 0 was healthy liver and 10 was liver transplant we’ve got him back down to a 5 and the plan is to get him to a 2 or a 3 before he comes home. And boy does he want to come home. He’s very slowly walking laps of the hall in hopes he can get his edema down so his shoes fit again.

The dogs are in camp until Saturday and I’m paying for muzzle training to see what we can accomplish — maybe that will be the secret to stopping the fighting.

And one of my friends is up in Philly for work for the next 3 days so she’s booked a two doubles room. I’ll have somewhere near the hospital to sleep and shower for the next 3 days.

This has been a really chaotic week but the world has been full of little kindnesses. I hope that your world is filled with them too.

7:49pm
Hi! Here’s where we’re at:

1. Nathaniel is OUT of the ICU, in Silverstein 916, with a bunch of other pulmonary and liver patients.

2. He accidentally pulled out his feeding tube so THAT will be a fun conversation with dietary tomorrow

3. I had a great conversation with someone from the liver department (after banning the attending from entering the room, that will ALSO be fun during rounds tomorrow) and I can comfortably say that if 1 was a healthy liver and 10 was a liver that needed immediate transplant, Nathaniel’s is more like a 5 and they want to get him to a 2 or a 3 before he leaves. That is a huge weight off my mind and for those of you who I said “no it’s not an emergency but you might want to make sure you have a suit that fits” you can stand down on the suit shopping.

4. (it is still a good idea to always have a funeral outfit at the ready, unfortunately. just not for Nathaniel right now.)

5. He must be feeling better because he won’t shut up. He always blames his talkativeness on the adderall but I have bad news for him: he’s just a chatty person 😉 especially when he’s tired 😉

6. The doctors are talking about releasing him as early as the middle of next week. That might make my life interesting because Myka has a CT scan and a kidney doctor appointment on wednesday. We’ll figure it out.

7. As for me, despite sleeping for 10 hours last night I’m tired and migraine-y tonight and I’m trying not to be short. I’m not sure it’s working but I am sure that a big component of it is i am hungry so I’m going to go order food and eat it and then sleep in this horrible recliner.

9:57am
We have made it to Thursday. Nathaniel’s been in the hospital for 11 days and the ICU for 6 days. He doesn’t need to be in the ICU anymore but they can’t find him a bed on the floor so here he sits. There are worse places to be — like the ER — so we’ll take it.

I am out of clothes and meds today so once the doctors do rounds I’ll be leaving for home. There’s a foot-tall stack of mail waiting for me to process it, along with a dozen or so other chores that I will probably ignore. As with all “conferences”, I try to hold to the 5-2-1 rule: 5 hours of sleep, 2 actual meals, and 1 shower. In reality I’ve been holding to the 4-1-hahaha-you’re-funny rule: 4 hours of interrupted sleep, 1 actual meal, and showers happen when I get home. But I am intentionally under-packing when I get here so that I must go home every 3 days.

The dogs are still at Petsmart and based on the pictures I’m getting, they’re doing well.

Nathaniel has actually started to pick at his meal tray!

The docs are still trying to assess why he’s having abdominal pain and exactly how bad his liver is. They pulled 2L of fluid off his abdomen yesterday and they sent some of that to culture. They’re planning to run an MRI probably today (it’s not stat). Outside of those things he’s supposed to sit tight and relax and rest and sleep. We’ll see how well he does after I leave, which are his hardest times. I am 100% sure that if the situation was reversed I’d freak out whenever he left too.

More later, rounds are beginning!

6:36pm
Nathaniel’s starting to be allowed to get out of bed and move around with supervision. Gary and Shirlene came to visit for a little while. As usual it’s been a revolving door of doctors and ideas, all moving us forward. They did some stuff to drain some fluid off and that’s off to be cultured. And we’ve been waiting for a bed on a not-ICU floor for a couple of days so hopefully we’ll move tonight.

***
6:46pm

Nat hasn’t peed all day. So they’re going to stick a catheter in just to pee. (Note to self: always pee.)
Nurse: sorry, this isn’t my favorite thing to do
me: I HOPE NOT.

3:02pm

Short update while I gather more info: Nat’s stomach pain is increasing and they don’t know why. Looks like it might be a day full of tests. Also his hallucinations hit one of the “now you have a one-on-one nurse aid” buttons which means even if I’m not here there’s someone sitting with him full time. On one hand, that’s a bit scary. On the other hand omg do I feel better about the idea that I can leave to go home if I want to and someone’s always with him. I extended the dogs’ stay in camp to Saturday and told the bathroom remodelers this is a good week to paint. I’ll probably spend the rest of the afternoon making phone calls to reschedule things.

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

***
7:08am

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

***
7:40am

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

***
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.

***
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.

***
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…

***
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

***
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

***
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.

***
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.

***
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.