Month: October 2025

1:52pm

Ah we have reached the point where I finally have a half hour cry and meltdown. People are sending me information to choose a home health provider, but nobody will tell me if they’re planning to discharge Nathaniel or when. So how am I supposed to pick a company for services if I don’t know what services he needs? And why is everyone insisting I wait until 4pm to find out when somebody clearly knows something or they wouldn’t be asking me to choose a home healthcare provider? This is literally the thing that throws me over the edge every single time.

There is no discharge planning until rounds finish this afternoon because apparently nobody will send discharge planning around until they decide whether they’re going to send him home…. he’s so exhausted that the only time he was awake all morning was when I got in a fight with him over whether i should ask to have the docs come around and tell me what’s going on. He’s still not eating a reasonable amount, about 1000 calories yesterday. And while his white blood cells dropped slightly today they’re still apparently pretty damn high, so they’re trying to rule out an infection nobody’s been able to find. I’m terrified I’m going to take him home and he’s just going to crash out again.

***
3:24pm

Once I stopped crying I very politely and professionally raised hell with four doctors.

Apparently the team that sends out the text message for you to choose the home healthcare folks will do so as soon as they know you’re going to need home healthcare, with no warning to the docs that the message is going to come in and I am not the first person who’s panicked. The docs here did say they’d put in a word on my behalf.

They are still investigating what’s going on and Nathaniel is staying inpatient until at least Sunday or Monday because there are still a number of things the docs are not happy about, including his sleep, the number of calories he’s taking in, his belly pain, and the fluid that is already starting to refill on his abdomen. They’re not going to kick him out by any means but it is becoming evident that we may have hit a wall on things they can do before the transplant evaluation. And the best way to get a good score on the transplant evaluation is to be strong enough to walk around, eating regularly as an outpatient, etc. which are all things that he needs to be outpatient for.

He’ll only need PT when he gets home, both physical and respiratory from what I heard. His CF doctor said that his CT scan of the chest and abdomen came back so clear that most people (including doctors) wouldnt’ have any idea he has CF. He’s perfectly healthy if you ignore the part where his liver is trying to kill him.

So the plan for the day is to try to get him up and moving, try to get him to eat, and then go back to the hotel for the night. Then tomorrow I’ll check out of the hotel, spend a little time here to make sure I know what’s going on, then go back to Petsmart and pick up the dogs and take them home.

***
5:14pm

nurse: i’m going to give you some levananol
me: doot dooo do do do
nurse: and here’s your lansoprozol
me: do do doot do
nurse: and here’s your eye drops
nat, looking me dead in the eye: go ahead, fit that one into the song!

8:00pm

Hello from university city!

I am waiting for my order at one of my favorite Chinese places while writing this note. Myka is back at Petsmart after a successful day yesterday — she is already on the mend — and I am staying at the Sheraton less than a mile from the hospital.

Nathaniel was moved to Ravdin 931 at 6:15 this morning. The doctors later apologized for the early morning move. He’s also had a CT scan and a paracentesis today so he’s out like a light and will hopefully sleep through the night.

I only got to talk to Dr. Hadjiliadis today, Nat’s CF doc. He said that the blood draws indicate Nat has an infection, but they don’t know where. So today’s activities were all centered around finding it so we can beat the hell out of it.

Tomorrow is Friday and the doctors are often off on fridays because they work such long hours the rest of the week. I don’t know if they’re going to have results of the tests by tomorrow or not. But now that I’m sleeping walking distance away I feel better knowing I can get there quickly.

10:11am

Good morning friends! I have decided to wake with positivity and joy. And also I am hiding a bat behind my back in case the doctors give me any shit. I call this the Aunt Ginny method of dealing with fellow doctors.

***
2:00pm

We talked to the docs and got information about a liver transplant. N is thinking it over. The biggest worries health-wise are his strength and his lung health, both of which are good but could be better.

The liver he has is not going to get better.

Cystic fibrosis has allowed his liver to fill with gunk, and that’s caused cirrhosis and fatty liver disease. It’s giving out.

It doesn’t happen to everyone with CF but at least in the past part of that was because they died of bad lungs first.

I have way too many emotions to even let them in the door so I’m riding this all as “it is what it is”.

***
7:24pm

How long have I been going to the hospital now? The parking garage attendant said good night and have fun feeding the dogs because he recognizes me.

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.