Tomorrow marks three weeks since Tim was admitted to the hospital for his transplant surgery. Last week, doctors had started tossing around the possibility that he could be discharged that day. We started post-transplant education, medications were ordered and secured, and plans were set in motion to get Tim “home” and transitioned into outpatient care.

It looks like Memorial Day will be spent in the hospital this year, though. One of the anti-rejection meds he’s on has a nasty side effect in some kids that causes a lot of GI upset. Of course, Tim fell into that group, so he’s found himself not feeling the best and back on maintenance fluids to combat dehydration. It’s affected a lot of his lab results and tests, making it difficult to know what’s going on and why certain important levels might be off. 

One of those levels – creatinine, which is an important marker of kidney function – skyrocketed. In fact, it was back on par with what it was pre-transplant, which was definitely concerning. 

After a lot of back and forth and conversations with his doctors – which included fun phrases like “rejection” and “biopsy over the weekend” and “pulse steroids” – they think they’ve narrowed it down to a couple of medication issues related to GI issues/dehydration. In particular, one of the anti-rejection meds can be toxic to the kidneys if the level is too high.

Relatively good news, all things considered. That’s something that can be managed without a lot of added stress or more invasive procedures. Now, we’re just waiting for Tim to feel better and watch his labs to hope we see a downward trend in creatinine with some medication adjustments.

At the same time, we’re watching markers to show that his FSGS is getting more under control and closer to remission. He’s done with pheresis, and he had a special infusion on Friday to hopefully put him closer to where he needs to be.

It’s a lot. 

Plus, he’d gotten his hopes up that there was a possible end in sight to this lengthy hospital stay. He took the news well and understood the circumstances, but was clearly disappointed. It’s so difficult to watch him struggle with everything going on. He’s trying – for me – but his smile isn’t offered as freely, and his eyes are a window into the sadness and anger he’s grappling with on the inside. It’s heartbreaking.

He’s also not feeling the best physically because of a drain in his abdomen that’s still there from surgery… so getting him to get up and move has been a challenge. He’s spent a lot of time binging old TV shows (recent favorites have included The Magic School Bus, Scooby Doo, and the Snoopy Show), playing his Switch with me, playing board games, and listening to my dad read him stories.

We walk down to a “sun room” at the end of his floor to play I Spy, look at the cityscape, and talk whenever he’s up to it. We’ve worked on a Lego set some, but with an IV in his hand or arm, it’s not his favorite pastime. He’s even been on TV here at the hospital a few times – once for a segment called “Call and Draw” and twice for a gameshow called “What’s in the Box?” They’ve been very cool experiences that bring him little doses of genuine joy and a sense of normalcy.

In fact, here’s Tim on What’s In the Box, in which he handily beats his opponent:

Hopefully, things fall into place soon, he’ll get discharged, and he can begin to explore the city on his days off from the outpatient clinic. He has grand plans to visit the zoo, catch a game at PNC Park, find the best mac and cheese and ice cream and sushi and pizza, finish his Luigi Lego, and do anything that brings him a little bit of unmitigated joy. 

Maybe the next update will be just that. 

For now, I’m thankful for his incredible nurses, doctors, and everyone else who’s been involved in his care. Everyone is so genuinely nice and invested in Tim’s recovery and well-being. The lengths to which people are going to bring a smile to his face or help him navigate these darker days have been incredible.