Tim’s creatinine level jumped again (and again, and again), prompting his doctors to address the one issue that’s been left unchecked: possible rejection. While still hoping and believing the creatinine issue was medication-related, they were concerned that they could be missing an important piece of the puzzle by not exploring every possibility, including rejection.

Unfortunately, the way to check for rejection is by doing a biopsy of the transplanted kidney. So, after already undergoing two procedures under anesthesia during this hospital stay, Tim was prepared for yet another. Needless to say, he was less than thrilled and adamant that he would not be participating. A new game for his Switch 2 – Mario Kart World – helped to take a bit of the sting out of the surprise and provide some much-needed distraction from a very stressful situation.

In anticipation of possible rejection, his doctors pre-treated with high-dose steroids…. If you have kids and have experienced them on high-dose IV steroids, you have my sympathies. It’s tough on them (and everyone around them). 

Tim’s had two biopsies before. The first time he woke up from anesthesia, it was… intense. He raged, to put it simply. Multiple nurses had to hold him down, and it took me a while to talk him down and back to reality. It’s haunted him ever since. I bring it up with everyone anytime he has to go under for a procedure. We want to avoid that at all costs. Since then, it’s been an okay experience. Not the happiest of kids upon waking up, but not enraged and out of control.

Because of this one experience, though, he’s incredibly anxious about these types of procedures. When they came to get him for the biopsy, he fell apart. My heart broke, yet again. He sobbed and pleaded, asking us not to make him do it. Child life has been amazing here, and the specialist came down with us to help distract him before the procedure. He was even relieved that she could go back into the surgical room with him, so “at least he’d know one familiar face back there.” We looked at I Spy books and did our best to keep his mind off the surgery. In an uncharacteristic turn of events, the team let me back into the surgical room to be with him until he was fully asleep. I got to don a bunny suit and all and see where it all happens. I held his hand and stroked his hair while Michaela, the child life specialist on his floor, held up her tablet so he could watch Scooby Doo.

Falling asleep might have gone more smoothly, but once again, his wake-up did not. This time, he was still reeling from the effects of the pulse steroids and side effects of super high levels of anti-rejection meds that cause, you guessed it, aggression and irritability. Let’s just say that it was an eventful afternoon that left many nurses, techs, doctors, staff, and caretakers with quite a story to tell. 

Tim was, once again, traumatized by the experience. I know that he’s probably going to need multiple biopsies and procedures under anesthesia over the course of his lifetime, and I can only hope that this is the last time he has to experience a recovery like this. 

The good news: preliminary results show no signs of rejection. This is the best outcome they could have hoped for, though his kidney is still struggling because of (a) acute injury due to medication toxicity and dehydration and/or (b) FSGS complications. 

We’re waiting on more comprehensive results to figure out a plan of action, but it’ll hopefully just be a watch-and-wait scenario as things level out, his food and water intake become more consistent, and the treatments we’ve used to combat the FSGS recurrence work their respective magics. 

This has probably pushed back his potential discharge by a solid week, meaning we’ll have another weekend in the hospital before being reunited with Jacob and Shay. Fortunately, Shay seems to be doing better in her element at home while Jacob is recovering well from his donation surgery. We miss them terribly, though.

In the meantime, Tim’s thrilled to have his full unrestricted diet back and to have had his JP drain removed (which was the bane of his existence for a solid three weeks). He’s happier to get up and move around – we’ve visited the outdoor healing garden on a lower floor, walked around the transplant recovery unit a bunch, and spent time in the sun room at the end of his floor. 

Despite everything, he’s trying his best to remain positive and look forward to all of the things he can enjoy once he’s given the all-clear to move to outpatient care. Hopefully, that’s sooner rather than later.