September 9, 2026
Tate is still struggling. Tuesday night she was worse and extra miserable. We tried everything in our arsenal for a couple hours and around midnight headed to the ER. The vomiting, pain, confusion/anxiety and extreme migraine got worse. To avoid a stop at the closer North campus and subsequent ambulance transfer, I ended up giving her the emergency injection on the way (Thankful for a self-driving car.)
((We’ve been asked why we don’t call for an ambulance to main…our town service can only take her as far as North campus where they triage and then transfer to another ambulance company. $ and a long, exhausting process. So much faster and less traumatic for Tate to take her myself and alert her team who alerts the ER that we’re coming in. She is always fast tracked through straight to a room. Grateful for this! ))
Within 10 minutes of high dose Intramuscular steroid, her body completely calmed. Adrenal crisis for the win…again. She isn’t presenting classically, so amongst medical providers it’s up for debate. But the evidence that is Tate trumps any documented presentation or labs that are so unreliable due to the meds Tate is on.
ER did a brain CT to rule out a bleed or clot , grabbed blood cultures and lots of labs and we got home at 8 am.
Yesterday we were headed into crisis again. To avoid injection and a mandatory ER visit, we gave serial crushed steroids through her g tube. Not as dramatic an improvement, but definitely helped and got her through the night at home. She is sick and we don’t know what is the major source. We were told at the ER to stop stress dosing Tate at home. It’s the only thing currently keeping Tate going. Good intentions with lack of understanding of what is actually happening. I don’t really know either, so we’re making it up at home as we go. Doesn’t seem to be another good option as the hospital doesn’t know either.
There’s a bit of movement happening behind the scenes and is including our outpatient Denver hospice/palliative NP and one of our primary providers that I heard from yesterday. But there is no good plan yet. The doubled med started at discharge we are now holding until insurance approves. This is an expensive med insurance denies then you need to get into a pharmaceutical bridge program. Grateful for the program, but the long wait is harmful. The way around it is inpatient administration.
Tomorrow Tate will get her new feeding tube. She’s not eaten more than bites for days but can’t handle formula through her g tube. So the timing of the J replacement is important so we can get some nutrition into her.