This morning started off tough—Skylar threw up a few times, and it was clear her body is having a hard time keeping up. Because of her gastric paresis, her feeds just aren’t moving through the way they should anymore. Yesterday, milk even started to leak from her G-tube, a sign that things were backing up.
The medical team has now slowed her feeds down to just 5ml an hour and plans to stop them completely soon. Tomorrow, she’ll begin TPN—nutrition through an IV. It’s a necessary step, but one that feels heavy. Hopefully Skylar’s digestive track will recover after the bone marrow transplant and she can return to tube feeds..
Again, Skylar has clung to her flip book all day. She pointed to it repeatedly, signing “jump” and asking both me and her nurse to take her to the trampoline park.
As the week has gone on, Skylar has grown more and more wary of her hospital bed. To her, it’s become a place tied to discomfort—getting her vitals checked (which I counted happened about 20 times today), taking medications, and brushing her teeth four times a day.
We’ve started adjusting our routine, taking her vitals while she’s in her chair or on the couch, just to help her feel like her bed can be a place of rest again—not just procedures.
But this morning marked a turning point. Skylar didn’t have the energy to leave her bed. She only got out once to ride in her wagon, a moment she usually loves, but even that was short-lived. She returned to bed quickly, exhausted.
Now, when the nurses come in, she instinctively pulls the blanket over her head, trying to hide. Just a week ago, she greeted them with curiosity and playfulness.
It’s hard watching that shift. She’s tired. And she’s trying to protect herself in the only ways she can.
