Eliana’s Medical Update — October
October has been a whirlwind behind the scenes. Over the last several weeks, Eliana’s BUN levels have been trending high, and despite multiple tweaks to her peritoneal dialysis (PD) at home, we just couldn’t get things under control. Her team decided it was time for a closer look — what we hoped would be a short inpatient stay to monitor things more closely. But when her numbers didn’t improve, and actually worsened at times, it turned into a full two-week hospitalization.
The goal: get her body clearing waste effectively again.
On day one, things looked promising. Her labs responded well — a huge relief. But after that, her BUN crept back up again. Day after day, the team adjusted her PD prescription, hoping the right combination would click.
At first, the doctors suspected nutrition was contributing — when the body isn’t getting enough calories and protein, it can start breaking down muscle for fuel, which pushes BUN levels higher. So we tried all the calories and snacks we could to support her.
But as the days passed with little progress, another hard conversation surfaced: hemodialysis.
We always knew PD wouldn’t last forever. Eventually, the peritoneum can scar and stop clearing well. And Eliana has done hemo before — briefly, after her transplant failed. It was extremely tough on her physically, and emotionally draining. Hemodialysis days can leave kids exhausted and nauseated — and for a child who needs energy and nutrition to grow toward a future transplant, that’s a big challenge.
This was the longest hospital stay she’s had outside of surgeries, and it was an emotional rollercoaster for all of us. Through it all, my mom — “Deedle” — was our steady rock. Without hesitation, she made the long drive from Louisiana. She kept Eliana smiling, entertained Parker, and helped us breathe when we needed to. (We love you, Mom. 💜)
Toward the end of the stay, Eliana had a PET test — which measures how well her peritoneum clears waste and helps the team fine-tune her dialysis. With those results, we left the hospital with a new PD prescription and a renewed sense of hope that we weren’t out of time yet.
And then… labs three days later were stable. Maybe even a touch better. 🙌
We allowed ourselves a deep breath. Not done — but hopeful. Clinging to the possibility of more time on PD, more time to grow stronger, more time before the next big leap.
So what’s next?
The next step is still transplant.
PJ is currently in evaluation as a potential donor for the DISOT clinical trial at Stanford. If he qualifies, the earliest Eliana could receive the stem cell transplant would be April — followed by the kidney transplant no sooner than six months later.
Like we’ve been told: this is not for the faint of heart.
It’s not the transplant itself that’s hardest — it’s preparing her body to accept the stem cells. The protocol is intense. The year ahead will not be easy.
But the potential outcome?
✨ A kidney free of FSGS
✨ No anti-rejection medications
✨ A life with less limitation and more childhood
Thank you for every message, every prayer, and every kind thought you send our way. We feel them — and they help carry us.
A little lightness — because that’s who she is
She’s going to be Wednesday Addams for Halloween — and she can slip into moody-teen glare faster than you can snap your fingers. 😂
And when she walked through our front door after that long inpatient stretch, Cleo and Gemma nearly tackled her with love. Those pups are always her happiest welcoming committee.
For now, we take things day by day — adjusting to her new PD cycles, balancing blood pressures, and holding our breath a bit every time labs come back.
We’re praying for good numbers on Thursday.
One day closer. One step stronger.
Always forward. 💜
