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October 17

Liver Transplant Adventures

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.

Posted on

October 16

Liver Transplant Adventures

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

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3:01pm

Just called the nurse and asked to have someone come down and evaluate him because he’s dropping everything he picks up.

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5:05pm

Today I learned 20% of patients at a hospital experience delirium — 30% or more if it’s the ICU. So whatever is going on in N’s brain should only last for a short time until his body is clear that all is good.

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9:04pm

OK, I’ve driven home, picked up the dogs and all their stuff, dropped them off at Petsmart, bought myself a blanket at the five below, and now I’m going to pick up some soda for the room and then drive down to Philly and sleep in Nathaniel’s hospital room recliner. Hopefully that will cut down his agitation and delusions.

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October 15

Liver Transplant Adventures

4:19pm

We’re not out of the woods yet but we’ve made progress. Nat’s liver was filled with “stones, sludge, and pus” all of which they sucked out with a big tube. He’s currently jaundiced, on pain meds and antibiotics, and when I arrived he was still hallucinating. On the other hand he was also hungry for the first time in close to a week, and he’s FINALLY asleep right now. I think we’ve turned a corner and are no longer facing disaster — but time will tell. If the antibiotics clear the infection, his liver numbers come down, and he stops hallucinating, he will probably be out in 3-4 days.

I need to stop reading the lab values as emoji. Value <3 doens’t mean they loved the value.

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6:35pm

Oh my god he’s finally talking like a normal person

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October 14

Liver Transplant Adventures

8:45am

Nat spiked a fever overnight so they moved him to a different floor and ran some antibiotics. They just called me to let me know — he’s apparently agitated and confused (delirious) so they want me to come in and calm him down so they can try to tell if it’s the autism / frustration from being confused or if it’s a symptom of the liver trying to take another dive.

Anyway dogs must be fed and I must be dressed first — shower will have to wait I guess — and everything else will follow from there.

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11:17pm

Well. He’s got delusions all right. And some day I might share them but right now I’ll just say that I never expected him to believe that I am an imposter and not his real wife. It was a very VERY hard day.

In the meantime his belly pain has mostly gone away but his blood tests and similar items are not at all what they should be. They’re going to do an ERCP tomorrow and see what’s going on.

Thank you Sarah for picking me up when N insisted I had to go to HUP in the transport ambulance or he’s be disappeared, and that I had to come home with a friend and not be around strangers who might be “them”.

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October 13

Liver Transplant Adventures

Still working the waiting game. No transfer so far. His body’s doing new and interesting things like messing with his lactic acid levels so that’s fun. (They’re back under control now but whee! more stuff to read up on!) Meanwhile my giant order of bakers racks and bins from Amazon has arrived so my front porch is filled with boxes.

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October 12

Liver Transplant Adventures

Nathaniel is currently admitted at the local hospital (Pottstown) because he was too sick last night for me to get him straight down to HUP.

There’s something wrong with his liver that is causing excruciating pain but this place isn’t equipped to handle it so we’re keeping him comfortable in Pottstown until they can transfer him to Hospital of the University of Pennsylvania, which is who handles most of his stuff.

I am not having a good time.

The dogs are at home and crated, a bit annoyed about it but at least here they have all their blankets, etc. which they wouldn’t have at Petsmart.