A Marathon He Never Wanted To Run

I’ve been a bit absent from updating the blog, and I’m sorry for that. Progress has been slow, especially after being denied a transfer, and it’s taken some time to regroup. We are still pushing forward and continuing to explore the possibility of transferring Micah to other centers.

Recently, we spoke with an incredible palliative care doctor, someone who truly took the time to review Micah’s entire chart. Halfway through, she admitted she needed a break because, we can agree, it’s a lot. That alone spoke loudly to us, in the best way. More importantly, she explained things to us with empathy and clarity. We needed that. Not just a kidney doctor or a liver doctor who can only speak to one piece of the puzzle, but someone who could see and understand Micah’s whole situation. Someone who could bring us alongside that understanding and advocate for him the way we’ve been trying to do all along.

At the core of everything, his liver is failing. And because the liver affects so many parts of the body, other systems are struggling too. When the liver can’t filter toxins, those toxins build up and affect the brain, causing confusion and altered consciousness. His kidneys are also failing, which is why dialysis is now needed. Along with this, there have been issues with bleeding and infection.

On Saturday, he actually had a really good day. He was alert, engaging, and entertaining everyone, like only he can. But that night, things shifted. He became agitated, annoyed, and confused. Since then, he’s spent several days in what feels like a deep sleep, almost as if his body hit a wall.

The palliative care doctor helped us understand it this way: Micah’s body is essentially running a marathon over and over again, nonstop. His systems are working overtime just to keep going. So it makes sense that he’s exhausted.

Today, though, he is very awake and very alert. He’s still confused and trying to whisper. He can’t really talk yet, and we don’t know if his vocal cords are damaged or if this will improve with time. Some words and phrases come through clearly. A lot of it, admittedly, is guesswork. I can’t read lips, so much of this feels like sibling telepathy.

On Saturday, I told him, “Stupah, you have nine lives.” He shook his head no and whispered, “Fifteen.”
That might actually be true.

Today he’s quieter, but alert. Still confused. Still a bit agitated. But here. And present.

Right now, treatment is focused on support, not a cure. The medical team is managing complications, supporting struggling organs, and doing everything they can to reduce toxins and give his body space to recover.

Recovery is still uncertain. A liver transplant is not an option. Palliative care is involved to help manage comfort, provide clarity, and support both Micah and our family as we continue to take this one day at a time.

Thanks for sticking with me, friends. Micah and our family have some of the best people holding us up. We're supremely grateful.

-Hannah/"Stupah"