July 23, 2025
Today was Tate’s 3rd Saphnelo infusion. She got to give Pringle his belated Birthday gift….staying true to the yearly food theme with him, she got him a cherry blow pop squeaker. He was so excited. Too cute. Tate has labs run almost weekly it seems so we don’t often get days with so many tubes. Last week was 6 or 7 and today was 9 tubes. That’s a lot even for a yearly draw, but really a lot when she’s getting drawn almost weekly.
Tates BP was super low today-especially this evening and tonight. Makes it hard for her to keep her eyes open. Unfortunately, lately steroids and iv fluids aren’t as effective. Tomorrow brings an echocardiogram to make sure new heart issues aren’t contributing to the full body edema.