Health Updates

10:29pm

We did what felt impossible: we went to a follow-up appointment for both the transplant clinic and the CF clinic in one day, along with minor satellite visits that always orbit the big ones, and nobody threatened to pitch Nathaniel back into the hospital.

His lung function is down quite dramatically based on the respiratory tests but they think that’s more muscle wasting / weakness than it is infection or poor health, so they want him to keep eating and doing PT to get stronger and stay healthy. His transplant numbers for his liver are exactly where they should be and his kidneys are even better than before all the shenanigans began. They said “keep doing what you’re doing”.

I am immensely relieved.

Tomorrow: we keep doing what we’re doing, trying to get a little better at it every day. And then we keep that up for the rest of our lives. Piece of cake, right? 🤣

 

7:03pm

We are starting to get the rhythm of after-hospitalization life. We’re still at the hotel, because it’s a nice hotel and the drive from Pottstown to Philadelphia is not as nice. Nathaniel had an appointment with both a nutritionist and a pharmacist today, and I had an appointment with my counselor and with my ENT.

Tomorrow Nathaniel has blood labs, pulmonary function tests, an appointment with the crew at the CF center, and an appointment with the crew handling outpatient liver transplants. After that, we will pick up some prescriptions and return to the hotel and collapse in a heap. That’ll be our life for a while.

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.