May 26, 2025
Happy Memorial Day! Thankful for all those that have sacrificed their lives for our freedoms.
Tatum declined Friday into the night. I had our bags ready. By evening things were getting worse more rapidly than I was comfortable with. I didn’t think we’d make it all the way to main campus (an hour+)and thought I’d have to take her to North and they’d transfer her. But always trying to avoid another admission , I put everything I could think of through Tates J feeding tube as she wasn’t in a place to swallow anything. I added more stress dose steroids and eventually her body settled down and she was able to sleep. I’m now certain she was headed into adrenal crisis. Scary stuff! She didn’t fit any of the guidelines or protocol for stress dosing. But those steroids are life saving for Tate. Now to figure out why and what is stressing her body enough to get her to that place.
Keira ended up coming home to us and Tim returned home Saturday night after being gone all week. Tate is better than she was and K is back to work at camp. So today is a good day.
The emotions that come later from an event like this are often heavy. The responsibility of navigating something nobody understands can be intense. There was a young man we follow that unexpectedly died a couple days ago. He was outpatient and had a good day. The fragility of these kids is often misunderstood. Being home doesn’t mean they are well. And many think they have the answer that will fix them if we’d only do A, B or C. But there’s so munch that isn’t shared as to what we’ve tried, researched, etc. And you can believe medical moms have researched it all. Thankful to squeeze the ones I love today both in person and through simple texts and phone calls.