When Skylar was in the hospital, I thought life couldn’t possibly get any crazier. But I quickly found out that being home came with a whole new set of responsibilities.
Every day now begins and ends with mixing Skylar’s medications and prepping her TPN and lipids (IV nutrition). For the foreseeable future, IV nutrition is her lifeline since she still can’t tolerate anything by g-tube. We’re hopeful that one day she’ll be able to, but for now, this is where we are. Between preparing, mixing, and administering everything, it takes at least 3–4 hours each day just to keep up with her meds and feedings.
Skylar’s GVHD is slowly improving—her stool output has lessened—but she’s more fatigued than before. She can manage short distances on her own, but most of the time she prefers a stroller, wheelchair, or dad and brothers who carry her around without hesitation. We’ve been told that global regressions after a bone marrow transplant are to be expected, and that within a year she should bounce back. Until then, she has a devoted team at home answering to her every need.
Our weeks are full of trips back to the hospital—2–3 clinic visits for her ECP treatments, blood transfusions, and IVIG infusions. Those are long, exhausting days, filled with endless labs that leave Skylar wiped out.
Nights are no easier. Since coming home, sometimes Skylar struggles to sleep. She often tries to get out of bed several times each night. Insurance has approved a posey bed to help with her elopement issues, but it won’t arrive for another six months. In the meantime, we’re using a bed tent—a temporary solution that’s already been tested by Skylar’s mischievous determination. Just the other night, she managed to crawl out, unzip her IV nutrition backpack, and drag her TPN around by the central line in her chest. Needless to say, we’ll be reinforcing the tent to make it less penetrable.
Life outside the hospital isn’t easier—it’s just different. It’s messy, exhausting, and sometimes overwhelming. But it’s also filled with moments of gratitude. Gratitude for small improvements in her health, for the laughter she still shares with her brothers, and for the privilege of caring for her at home.
