February 3, 2026
A pretty unhappy Tate currently. She’s been feeling more crummy again the last few days and has had some very very low BP’s to support that her body is stressed. More pain, more fatigue, more migraines, rashy cheeks and more darn blood clots from her line.
Yesterday was an appointment with infectious disease and the plan was to switch up her antibiotics to a new iv medication. We learned today that it’s been too long since she’s had this new one and so we were sent to the ED today to get an hour infusion with an hour watch after to ensure there wouldn’t be an anaphylactic reaction. That was scheduled for 2 pm. It’s now going on 7:30 pm and she’s gotten two iv doses of dilaudid, labs and no antibiotics…yet.
Here’s why…
This morning her BP was 70/49. She was understandably very sleepy and jumbling her words. But in general, fully conscious. Tate can rock really low BP’s. It did take 2 liters of iv fluids and 45 mg of steroids to get her to 85/53. I felt like that was enough to keep her out of the hospital, thought the latest dose of steroids would catch up further and we headed to the ER for the infusion. But, after speaking with 5 of her specialists and waiting to speak with two more, people are pretty unhappy with her picture. Her BP is now running high because she’s not happy that admission is back on the table and pain is a bugger. We’re still advocating hard to get home. But low BP and clots=disaster. There is bigger concern that the line is being rejected by her body or there is a bigger vascular inflammatory process going on. Sigh….I havent even finished my hospital laundry from last week yet. Still holding our breath to get home late tonight.