Health Updates

4:53pm

Nathaniel was discharged at about noon today. Now we’re all home and mostly settled. Nathaniel will be doing home IVs in addition to the feeding tube and respiratory therapy and oral meds. It’s complicated but we should hopefully be able to manage.

Not that we have any choice. For complicated insurance reasons it’s difficult to hire someone on a useful timeline to come help. We always have the option to pay a not-nurse to do the work (or even more for a home nurse that doesn’t take insurance). Until and unless things get substantially worse we are our own caregivers.

6:24pm

Nathaniel has a respiratory infection so he’ll be coming home on IVs, but plans are moving forward and he will be coming home. We’re hoping it will be Thursday of this week but we also know how getting one’s hopes up too high for a specific date can be dangerous.

The feeding tube is replaced and being tested tonight, and they’ve made some medication changes. Now we wait.

10:11pm

Putting a plan together for Nathaniel’s continued treatment has been difficult The discussions are never easy and the future is never clear. Sometimes, like now, that makes it hard to choose between the options except by arguing it out. Which, as one might guess, is not a particularly fun way to spend one’s time.

The CF team is going to have someone swing by tomorrow to discuss options with us. Is a PEG tube available? What about IVs at home? How do we transition back to Trikafta — or will that option disappear if it affects the liver? You know, light airy conversations.

I boarded the dogs this evening and am sleeping over at the hospital to ensure I’m here when the CF team is. I’m very tired (and Nathaniel is too) but this recliner is the best place I can be to support him.

Saturday I’m heading out to Lancaster to support my mom and my family. If anyone wants to visit Nathaniel, Saturday may be a good day for it.

Dad died very early this morning.

Mom, Brian, Mary, and I spent the day at Mom’s house, figuring out what to do next.

There will be a memorial service later, but nothing immediate.  And in the meantime, Nathaniel’s here for me and I for him.

Thanks to everyone thinking of the Kent family tonight. We love you too ❤️

5:55pm

It’s been a long day and it’s far from over.

Nathaniel’s digestive system is not cooperating, which is highly inconvenient when trying to eat food and gain weight. The docs are doing their best but it’s not an easy thing to diagnose “food is horrible”.

We had asked about the possibility of placing a feeding tube in Nathaniel’s abdomen (called a PEG tube) so that he could get the tube out of his nose, but it’s a serious surgery and the Liver Transplant surgeons are concerned about the amount of scarring that Nathaniel already has. In other words, placing the PEG could kill him and, as Nathaniel put it? if we don’t find a different solution for putting some meat on his bones,  not placing a tube could kill him. Fun!

Tonight is a CT scan to see if his lungs are acting up. He’s on antibiotics already. They’re also pushing fluids (in addition to the ones in the feeding tube formula and the things he drinks by mouth) in case he’s dehydrated.

He just had an IV blow out, which is frustrating as hell because we’ve been asking for a PICC line and the transplant team is afraid it will cause infection if added. So we’re fighting for fewer stabbings because holes in his skin from failed attempts to place the peripheral IVs are *also* an infection risk.

Tomorrow is a gastric emptying test, which is essentially a test where they make you get up at some gawdawful hour and eat a toasted egg sandwich laced with radioactive material. Then over the course of four hours or so they take pictures of the digestive system to see how far the nuclear sandwich has moved. If they determine that he’s got gastroparesis (slow gastric emptying) then we have at least a partial explanation for why eating has been such a problem — and hopefully a course of treatment.

Along with all of that, the CF team has convinced the Transplant team to let CF take over Nathaniel’s care. Fortunately, this means working with the medical folks who have the most experience with “failure to thrive”. Unfortunately it also means moving from the nicest building in the hospital to one of the oldest buildings, so goodbye giant tv and push-button window glass clouding. Hello to showering in a bathtub that doesn’t drain. Moving to CF should help get everyone aligned more quickly, provide access to the CF-specific parts of care that Transplant just doesn’t have knowledge of, etc. etc.

When Nathaniel heads to his CT I’ll be heading home. We’re trying really hard to avoid me boarding the dogs and staying down here both because of the expense and because it made us all a little flaky. Bonus points go to nice weather for the dogs to romp around just as Mei has gotten a new ball she is convinced she can bury in the yard.

Tonight Nathaniel will restart Trikafta, the “miracle drug” for people with the homozygous CF delta F-508 mutation. The good news: that med will almost immediately increase his lung function and his ability to absorb food in his small intestine. Bad news: it’s known to be toxic to the liver so the Transplant team is going to be watching his blood labs like a hawk. There is no guarantee he’ll be able to use the med and no guarantee that his new liver will be safe even if they decide it’s worth the risks. But at 125lbs one is often willing to take risks one wouldn’t take at 185lbs.

To round out the day, my dad’s been admitted to the hospital in Lancaster with blood clots in his lungs. I was kind of hoping to avoid playing dueling hospital visits this spring, but since Dad’s been struggling with dementia for a while now, I suspected this would happen eventually. Nathaniel’s known my dad for 33 years, so the anxiety is hard on both of us.

3;54pm

Well, I get to be the asshole in the room again. I’d like to thank the UX field for 18 years of training…

Nathaniel is exhausted. He’s slept pretty much the whole time he’s been here. It’s not satisfying sleep. It’s “my body won’t let me stay awake” sleep. And it interferes with his care because whenever a doctor or PA comes in to talk about his care plan, he’s asleep.

Anyway, there was a rumor they were going to send him home tomorrow with orders to never miss a feed and also run the feeds a little longer so we can reverse the slide.

In other words, their care plan was “he has to force himself to try harder”.

i just did some forcing myself. I forced the nurse practitioner to face the fact that we the changes that have been suggested so far are not going to actually reverse his weight loss. I forced some discussion on whether he should even be on the transplant floor because the new liver is not the problem right now. I forced them to consider that Nathaniel has been managing his care since he was 13, he’s a highly motivated person who isn’t going to skip a treatment without a very good reason, and there are no damn bootstraps he can lift himself up on.

And honestly I’m being a little selfish in these conversations because the general assumption is that if he can’t take care of himself then I am going to be the one to pick up the slack. Which would be great except I’m already doing that. The next step in me getting involved would essentially make me a nurse 24/7 with no respite until Nathaniel recovered enough to go off the feeds, at which point he would “only” have to worry about his respiratory therapy, diabetes, and rebuilding his physical strength. And don’t get me wrong. I will stand by Nathaniel for every step. But I don’t think even if I became that super bitch nurse that forces everything to happen on time and perfectly that it would happen on time and perfectly. And we’d be back here anyway.

So I don’t know whats going to happen from here. Probably nothing today, since it’s Sunday. But it looks like I need to be here bright and early tomorrow morning to make sure we get the care he needs.

2:25pm

We were moved to an ER room around 1am. Just saw the current ER doc working this wing (I guess, no real idea how they’re dividing up the work) and he’s friendly and no-nonsense. He looked over the issues, noted the cough and the shortness of breath, noted that the white blood cell count looks high, and oh, there’s also the 20ish pounds Nathaniel has lost since coming home. (He’s around 125 we hope).

So yeah, an admission for failure to thrive looks imminent.

And in the meantime, they’re going to work on the feeding tube, run a bunch of tests for infections of all shapes and sizes, and see if we can go after whatever it is that’s preventing Nathaniel from healing.

***
5:40am

I’m back home and Nathaniel is as good as admitted. We spoke to the Attending (the doc in charge) who didn’t seem wholly convinced that Nathaniel needed to be brought in until she learned that he’s lost 60ish lbs since October, the last 20 of which were since January. Not a trend that anyone wants to continue.

Because he’s still within the first 6 months of his liver transplant, he’ll be moved to the post-transplant floor as soon as there’s a bed, we assume. That might take a bit, and by “a bit” I mean his record for time in the ER is 63+ hours (and probably higher as I don’t remember exactly.)

Time to sleep and then make a plan for the next few days.

***
6:09pm

Nathaniel’s in an official room on the post-transplant floor (not the ER) and they’ve manage to un-clog his feeding tube, so those are definitely improvements over where we were.

Myka, Mei, and Zoë are all home. They’re all tired from the noise and excitement of being boarded, so we’re having a quiet evening.

 

7:48pm

Hello from the ER at the Hospital of the University of Pennsylvania.

Nathaniel’s nasal feeding tube is clogged. That’s probably the easiest thing for us to fix – pull line, put in new line.

But he also has bed sores that haven’t healed since his last visit.

And he threw his back out last night. It’s probably nothing but while we’re here it’s probably good to get it looked at.

And he’s coughing.

I worry the most when he’s coughing.

Anyway, all indications are that we’re going to be here overnight before anyone even decides what the treatment plan is. We packed for the possibility. The dogs were boarded anyway because we just had the kitchen painted.

More later.

***
10:17pm

To the young woman across from us threatening to leave the ER because it’s been 3 hours already and they’re saying up front it’ll be another 3 hours and this is ridiculous:

Oh you sweet summer child.

love
anne

10:21am

Well, we’ve made it through January and most of February, and it’s time to take the stent in Nathaniel’s bile duct out. This appointment was originally scheduled for January, but the surgeon didn’t want to try to do an endoscopy around the feeding tube. So we waited, with the hope that Nathaniel would gain enough weight that the tube would be out by now.

It is not. Nathaniel’s weight is down to high school levels. His weight is my goal weight — but he’s 5 foot 10 and I’m 5 foot 2 so he should definitely not weigh anywhere near my goal weight. It is an ongoing problem and we’re working with the dietician on a weekly basis to try to bring his weight up.  (If things get bad enough they will admit him for “failure to thrive” but we’re all hoping we can avoid that.)

In the meantime, since the feeding tube needs to be changed monthly and we’re at the “monthly” line right now anyway, they’re pulling his feeding tube at the beginning of the endoscopy, doing the procedure, then placing a new tube before he leaves. At least, that’s the plan. We all know how plans go.

They just took Nathaniel back for his procedure. It’s a couple of hours, plus the time to come out of the anesthesia, so I’ll be chilling in the waiting room for a while.

11:30am

He’s out of the operating room and in recovery, so now we’re waiting for him to come around.

 

4:53pm

Well, it took Nathaniel until a little past two to shake off the anesthesia and get re-dressed, especially with all the protruding medical bits that go with it. And of course by the time we collected the car from the hospital valet, the traffic had picked up. It’s almost 5pm. The dogs are still boarded. We’re home.

The docs had to replace the old stent with a new one. Since the stent keeps the blood flowing into the liver, and we’ve already learned what a grouch the liver becomes when it’s clogged with things (bile or otherwise), he’s fine with having another stent. We both hope maybe next time they’ll be able to take it with no replacement, but “next time” is June.

Meanwhile, we’re home.

3:25pm

The liver team discharged Nathaniel yesterday, so he’s home again! Now it’s time to dive back into getting everything cleaned up and organized.

So many meds. Somebody ought to design a toolbox specifically for this purpose. And somebody ought to force all the drug manufacturers to standardize their bottles. But since neither of those things are going to happen today, I’m making do with lots of plastic bins, post-it notes, sharpies, and painter’s tape to ensure the notes don’t come off.

They’re not the kind of thing you can claim on your HSA but they’re definitely required.