September 6, 2026
We actually are home, but it’s with heavy hearts. This very brief admission was incredibly difficult for so many reasons. We CHC, but this admission showed us just how dramatically the medical system fails complex, chronically ill kids. You add in progression, and they are essentially completely unseen at times. I actually took Tate home last night in order to give her the steroids and fluids she needed. I don’t share this to reflect poorly on CHC, as they are an amazing facility with even better people caring for the kids. But rather to share the reality of where we sit and why we continue to choose home, not because Tate is well or is getting better, but because there is so little left to offer us when inpatient.
Tate’s EEG was abnormal. No seizures, but encephalopathy with diffuse slowing and especially in the frontal lobes of her brain. We did catch an episode immediately when placing it thanks to a quick thinking tech. Because that was the last time Tate was “awake” with the electrodes on as it was placed at midnight and taken off while she was still sleeping during the morning.
There was a lot of discussion surrounding Tate and upon leaving she was only able to stay conscious for seconds at a time. I wasn’t sure I could get her to the car without tipping out of her wheelchair. Her BP an hour before we left was 78/44. Still feels impossible that there was zero intervention or response. I won’t share the videos as they are difficult to see Tate in that state.
We were told that this is likely disease and further workup won’t change the outcome. On our end, to not try feels unfair. A healthy child never would have been sent home in the state Tate was in nor just been left to ride it out, especially not one with adrenal insufficiency.
So, I am sitting with a broken and smashed heart tonight, trying to make sense of the events that took place and what to expect in the coming days. Tate still has an amazing outpatient primary team and I know that there are things we will still try. And ultimately God can turn this thing around.