Post BMT +175
+175
Yesterday was spent with G&G B and Aunt Jen. We got Tate out for a fun morning. A quick visit, but so nice to have them all here! By the afternoon our house was quiet and Tate was feeling pretty crummy and running a fever. By 10 pm she had far surpassed “fever protocol.” We decided to wait a bit too take her as I honestly was desperate to avoid another ER all nighter followed by an admission. I stress doses Tate for her adrenal insufficiency and Tim and I took turns monitoring her temp through the night. By 4 am, she was down to 101 and by 10am was completely normal. I checked her blood pressure….79/44 not good. Stress doses her and checked again in another hour. 82/48. No much better. Temp started to climb a bit again and a call to her Dr. Landed us in the ER.
By 7 pm, Cuktures had been sent, labs were back, fluid bolus in and GI team and BMT came to a consensus.…IV antibiotics, and we could go since we’re already spending much of tomorrow in clinic appointments. With the stipulation that we come right back for any temp.
By 9 pm we are home in our own beds. So so thankful! Tate has slept ALL day. Isn’t eating or drinking anything and obviously does feel crummy. We are praying those cultures don’t pop positive and this is just her baby immune system working through another virus. Nausea has been fierce today. We think lack of GI movement is a huge factor. It’s been a week again despite all the things. A super frustrating, hard to remedy cycle with a non functional gut.
One of our appointments tomorrow is neurology. Lots hanging on that appointment. With a new to us neurologist, we are praying they’ve done their Tate homework and have some great thoughts.