Health Updates

1:59pm

Because nothing can ever go perfectly smoothly, we discovered last night that Nathaniel’s feeding tube had a clog in it and that had to be fixed before he could get a feed.  Thus our morning started with some hard work from a visiting nurse and then a visit to the HUP ER

Because the staff at Penn really are working their hearts out even on a Sunday in January, the line is now un-clogged. We’re currently waiting to be discharged from the ER so we can go back home and watch the Eagles.

Good thing that we’ve still got a few hours because ER teams are a lot of things but “fast” is not one of them unless you really really need them to be fast.

2:48pm

We have done what felt like the impossible: Nathaniel has been discharged from the hospital. He is now at the hotel with the most ridiculously large lineup of things that have to be done each day that I think I’ve ever seen and I say that as the 25-year wife of a CF patient. Whoo what an adventure.

But we’re here. Nobody’s in a hospital bed. The nurses have left for the day. We’ve got real (hotel) cable, can order whatever we want to eat, and can take hot showers for as long as we want.

Now, maybe if we’re lucky, we can pack up the drug boxes and then take a nap.

***
4:34pm

It took 2 hours and a phone call to get the meds organized and that’s just the pills, not the inhalation treatments, but we got this far.

good grief.

thank you lord for adderall, which allowed me to concentrate long enough to actually get that done.

10:36pm

I almost hesitate to post this because doing so may once again curse us, but theoretically, Nathaniel will be discharged from the hospital tomorrow and come “home” to the hotel.

The hospital spent most of the day calling me with questions, delivering supplies to the hotel, and otherwise disrupting the day. I would probably be nicer about that if they hadn’t called at 5pm to imply that they might change their mind, at which point I implied that they had better change it back right quick.

I spent most of the day at home because Myka needed a routine appointment and blood tests, so at least I got to pet my girl. I’m not sure she’s ever going to voluntarily get in the car with me again, I might note, since every time she’s left Petsmart since October 16th has involved her getting stabbed with needles and I think she’s done with it.

3:33am

Happy new year!

1:28pm

Welcome to our new year’s eve pajama party. Or something. I’m feeling just a bit under the weather (don’t eat the hospital cheesesteaks) and Nathaniel is being pumped full of antibiotics, so we don’t have big plans for the day.

Tomorrow the team will inject a needle through Nathaniel’s chest wall to drain some fluid that is probably left over from the liver transplant surgery, but which may be infected. If so, well, great! we found the source of the infection! but also boo! he has an infection. And if not, we keep dumping in the antibiotics and keep looking for the infection.

His breathing’s a bit better today, so that’s a good start.

More later, probably. If not, happy new year!

***
3:05pm

Hey, while you’re finishing up your year, think about becoming an organ donor. You wouldn’t be sitting here reading this blog if someone else hadn’t been willing to donate a liver to Nathaniel on what was probably the worst day of their life.

***
7:38pm

Baskin Robbins for dinner though Nathaniel’s still feeling gross when it comes to eating. We’re writing what he’s eaten on the door so the nurses don’t drive him crazy asking.

Me: well I know why you feel gross. You ate an infinite repeating decimal of milkshake.

Him: I… what?

Me: You had 1/3 of a 640 calorie milkshake, so that’s 213.333333333333… calories. Infinite calories trending toward zero is a sure way to get a stomach ache.

Him: So did you round it up to 214 calories on the door?

Me: Nah, I put 213.3 with the little bar over it to mess with the nurses.

***
8:38pm

Oh by the way, this is day 80. Thank you very much to Rodney Comegys, Brandon Service, and Steve Haberman for organizing a pinball tournament at X-Golf benefitting Nathaniel. (And thanks as always to Tony Makowski, who has been organizing all kinds of things from afar for us!) The Doordash and Marriott gift cards were much needed and we’re very grateful 🙂 The pinball community has a big heart.

11:56pm

Nathaniel is settled back into the transplant floor at HUP. We’ve retrieved all his belongings from the rehab hospital and set up all his stuff in his new room. 

Right now it’s all a story of antibiotics, since the evidence is that he has an infection, but no one is sure where. Fortunately (?), he’s also feeling more congested and short of breath than usual and this may be a case where the blood tests showed the infection entering town before the germs got the circus tents up. That could mean that this is a short visit and he gets released “home” to the hotel. 

On the other hand, most people don’t get prescribed a run of antibiotics for two or three days — taking too few antibiotics to fully kill the infection is a great way to cause drug-resistance, and the last thing we all need is another MRSA-like infection running around. (He does not, btw, have MRSA. Or a whole bunch of other things I could name and won’t.)  So taken from that standpoint I highly doubt that he’ll be released before the new year, and I’m mentally preparing myself to spend New Year’s Eve at the hospital. Most years we just play video games until the ball drops anyway, so this would just be a new location for an old tradition. 

8:27pm

Around 4pm Nathaniel learned that the rehab hospital was going to take him over to the Hospital of the University of Pennsylvania for testing. The current running theory is that he’s got a respiratory infection but no one has told him yet what the tests have revealed.

They have, however, determined that he’s being transferred back to HUP, so we’re sitting in the ER (all admissions are through the ER) waiting to see how long it takes to get a bed.

I’ll go get his stuff from the rehab hospital tomorrow.

***
11:53pm

Nathaniel is settled in his room. Unless something extra-exciting shows up in his CT scan there won’t be any decisions until rounds tomorrow morning, specifically the rounds by the CF pulmonologist team, even though the room is in Transplant’s territory.

I’m hoping to get my butt out of bed early tomorrow and make rounds. After that I’ll spend some time at the rehab hospital picking up Nathaniel’s things and moving them to the hotel room or to his new room at HUP.

On my way back into  the hotel tonight one of the valets said to me “Ma’am you live at this jawn?”

Yeah, yeah I do. And at this point I have no guess when I go home.

11:56pm

No word from the doctors on why the white blood cell count is rising and most of the labs aren’t back. Nathaniel didn’t have PT or OT because he was supposed to be discharged, so we played rummy and watched a bunch of YouTube videos.

11:42pm

We had a peaceful and quiet Christmas together yesterday. No visitors, no PT or OT for Nathaniel to do, so we watched Hogfather (a British Christmas movie based on a Terry Pratchett novel) and ate take out.

Today Nathaniel’s blood tests from yesterday came back with some anomalies, specifically a rise in his white blood counts that indicates he probably has an infection somewhere.

So discharge isn’t happening tomorrow and is now delayed until the docs know what’s up and come up with a treatment plan.

yay.

Anyway, we’re both in the city, catching up on needed sleep after a day of more excitement than planned. My train trip out to see my folks was successful but also veered from the plans. And then, just for kicks and giggles, Nature layered a “wintry mix” (ice storm, really) on top of center city that has every surface either slippery with ice, slippery from the thick layer of salt crystals the property managers put on the sidewalks, or both.

Tomorrow we start again. Sunday I hope to go home and switch cars since I really should have the one with the disability tags and the wheelchair in it anyway once Nathaniel’s discharged. The rest is still hiding behind the fog of war and will reveal itself further in the daylight.

4:47pm

I thought I was going to have to start this post with the bad news that Nathaniel wasn’t being discharged on the 27th and they’d pushed it back to the 30th.

The reason they needed to push back, they explained, was that they can’t get all his tube feed supplies put together by the 27th due to the holidays and people taking time off etc.

Nathaniel replied “then I guess I will just have to drink boosts [the nestle high calorie shakes]  until you can deliver the supplies” and stuck to that position with such stubborn ferocity that, well, that’s what we’re doing.

It probably didn’t help that I sent a sternly worded reminder to the transplant coordinator that this is”team Nathaniel” and not “team we-make-decisions-without-Nathaniel” and that a change was required. A few minutes after that was the meeting with the doctors, who up until that point had sent literally everyone but themselves in to discuss changes etc.

You can take this as a lesson in standing up for yourself at medical appointments if you wish — more people do need to learn to advocate for themselves. But if you do, also take it as a reminder that if you know your shit then you earn a place at the table with the doctors, and if you are a danger to yourself then people will make decisions without you. Nathaniel and I didn’t win the argument because we were stubborn, though that didn’t hurt. We won it because for every objection that the docs could come up with — knowing how to use the tube feeding, knowing how to adjust his insulin levels, being able to do his activities of daily living, etc. — we could prove that one or the other of us already knows it inside out and backwards, and generally it was the patient with the knowledge.

Advocacy is really proving to the doctors that you know your shit.

Nathaniel is currently enjoying a cup of hot coca and an IV bag of iron, and I am working on figuring out which items in the room can be taken out of the room today so that I don’t have to try to pack the whole room on Saturday. (Tomorrow I will do more of the same, since Friday I will be in Lancaster celebrating Christmas with the Kent clan.) It’s a better ending than I expected.

Possible updates to come, keep an eye open.

***
9:40pm

Well, we’re packing up parts of the room and bringing them back, so this is actually happening. Merry Christmas everyone!