Today marks Day +140 since Skylar’s bone marrow transplant — and officially five months in the hospital. It’s hard to believe how much time has passed and how much our girl has endured with such quiet strength.
In early September, Skylar spent two weeks in the ICU before being transferred back to the oncology floor. It’s now been about two weeks since that move, and one month since that terrifying rush back to intensive care. Thankfully, there’s progress. Her TMA is improving, her adenovirus levels are coming down, and her GVHD has finally settled. The doctors are cautiously optimistic that if she can go five or more days without needing a blood or platelet transfusion, we may finally be discharged again.
While she’s been in this controlled environment, her BMT and GI teams decided it was time to try tube feeds again—a slow and delicate process after transplant. They started at just 1 mL per hour, increasing by 1 mL each day. She’s now up to 10 mLs per hour, where they’ve decided to hold steady for a while. It’s been incredibly tough on her body; she’s been violently ill at times as her system adjusts. But the GI team keeps reminding us that we have to “power through” to wake up those cells and muscles that need to start absorbing nutrients again.
As expected, the increased feeds have led to higher stool output, so we’ll hold at this rate for now while her body finds its rhythm.
We’re hoping to be home by next week—just in time to prepare for flu season, which brings its own set of challenges for immune-compromised kids like Skylar. But for now, we’re grateful for each small step forward, for the doctors who refuse to give up, and for every quiet moment where Skylar can rest without pain.
We are especially grateful for those who have volunteered to come sit with Sky so I can step outside and get a brake from the hospital. Hiking has been my therapy and I look forward to the few hikes a week I get. Every day in this room feels long, but every day she’s fighting is one more day closer to home. 💛
