Day 12, Post BMT +135
Day 12
Post BMT +137
This weekend was pretty quiet. Tate slept most of it away. Second antibiotic was stopped yesterday and temp started to climb today. Thinking this could be related to Tate’s underlying adrenal insufficiency, we decided to increase her baseline dose of steroid. Tate has struggled with adrenal insufficiency now for two years and is steroid dependent. Her body doesn’t make enough cortisol which is necessary for life. So, it’s replaced 3 times a day with oral steroids. In people with functional endocrine systems, our bodies naturally create more cortisol for any type of emotional or physical stressors. Measuring cortisol on a regular basis isnt feasible, so learning when and how much to stress dose is challenging and ever changing. This is one of the ongoing challenges we are working through. Tate carry’s an emergency injection in the event she goes into an adrenal crisis.
Tatum was able to drink some Gatorade last night. Whoop! Nothing today yet and we haven’t resumed enteral feeds due to nausea, but we’ll take the small wins. We are still on track for discharge Tuesday. We are getting so anxious to get back to the apartment so we can get it packed up and move home permanently!
Thank you for all the extra prayers during this hospitalization. We are so grateful. The infection seems to be gone and we are ready to get back on track working on healing Tates GI system and eventually getting her off the tpn-IV nutrition and slowly adding back some normalcy.