December 12, 2023
+290 Continued….
We started out in a trauma room before 8 this morning. That means a little chair, bright lights, glass walls and minimal comforts. We will be here overnight so they moved us to a quiet little room with a recliner and dimmable lights. Last night was light on sleep at home, so this feels pretty peaceful and we are grateful! We’re in the makeshift “inpatient” hall. Apparently there’s 20 kids waiting for rooms. Not many (if any) discharges happen at night. So we’ll likely stay put along with everyone else.
Tate is feeling lousy but doing fine. As per her usual, she’s keeping them guessing. She has a fungus that grew in her urine from last weeks admission that had everyone pretty excited as it’s not typically seen in CO. Not sure exactly what it means yet, if anything. Tomorrow morning she’ll start off with an echo of her heart and we’ll go from there. Still testing RSV positive, as her body just can’t clear it, keeps her on precautions which is a big ol’ pain. She’s on IV antibiotics, fluids and the usual steroids for her adrenal insufficiency. She missed her Yourh Advisory Committee Christmas party tonight here at the hospital. This was a sad one for Tate. Her social world is pretty small and YAC has given her teen friends that can relate to everything in Tates daily medical world. One of the leaders and our childlife specialist friend, Reagan, found us and brought Tate a little Christmas cheer. So much kindness.
As a little catch-up…Monday Tate and I met with the neurosurgeon that will put in the intrathecal pain pump. It was a rough morning for tate as anxiety surrounding this surgery is high. However, the surgeon is wonderfully kind and experienced and we feel confident with him. She left with a smile and feeling hopeful. Surgery will likely be January.
Tim took Keira for 31 Botox injections in her face, scalp and neck on Monday to help with her migraines. We’re praying this works!