Tim is being prepped for discharge! After keeping busy building a 2,200-piece Luigi Lego set and beating so many levels of Super Mario Bros. U Deluxe, it looks like tomorrow – a full 4 weeks after his transplant – will be the day. Knock on wood. Fingers crossed. 

He’s excited, to say the least. He’s talked about Shay so much recently, telling most of the people who come to see him – therapists, nurses, doctors – about her, and I know seeing her in just a few days will bring him so much joy. 

His creatinine level has been trending down and is almost in the normal range. He had another round of pheresis today and is scheduled to have at least five more in the outpatient infusion center at the hospital over the next few weeks. 

Transitioning to outpatient care will come with challenges – new nurses and unfamiliar faces, new treatment settings and setups, and regular lab work not in the comfort or privacy of his own room. I’m sure it’ll be an adjustment, and we’ll have to find some new coping mechanisms to find a path to success.

The FSGS recurrence and slow (but very real) response to treatment have definitely thrown a wrench into our plans. Pheresis isn’t a long-term solution. Hopefully, the infusion he received earlier this month will work and, in conjunction with the pheresis, put him into remission. If not, we’ll have to figure out another plan of action, and that could involve a different, much less commonly used type of pheresis that targets the fats in his blood. 

Hopefully, we won’t even need to discuss that or other potential treatments. Hopefully, something goes his way for once, and he can get back home to the friends and pets he misses so dearly sooner rather than later.

He heard rumors of a discharge parade, so he’s doubly excited about what that might entail. I guess we’ll see what tomorrow brings.