Post BMT +176
+176
Today was a looong day for Tate! We had a two hour appointment with neurology. They do still believe Tate has a movement disorder and received approval to refer her out to the adult movement specialist over at university next door. We don’t know yet how long of a wait, but if too long, they want us to potentially explore either Stanford in California or Harvard in Boston for a Peds specialist. More neuro evaluations, some labs still pending and a repeat lumbar puncture in a couple months to see if protein, white cells and inflammatory markers are still high.
Pt involved mostly discussion. Nausea and pain were bad today for Tate. These long appointment days with PT tacked on aren’t very effective for Tate. We are looking into potentially working with our home PT and finding someone who specializes in EDS . We Caitlin with BMT which makes changes hard. But we also Abby, our home PT if we can get insurance to cooperate on enough PT days.
BMT was an add on due to the fever and low BP. I got a gentle but clear reprimand for not following fever protocol. The words, “Russian roulette” may have been used. Even though I felt confident that Tate wasn’t presenting like she would with sepsis, you never truly know without cultures. I truly do 100% respect the dangers that come with a central line and should’ve looked past my fatigue and desire to JUST BE HOME and chosen differently. The outcome was good and I still am thankful to avoid a long night in the ED. It’s clear Tate isn’t feeling well, but no fevers today, and cultures remain negative. GI has a much stricter fever protocol and will take over Tates central line in two weeks when Tate is off her tacro. This means with the next fever of 100.4 or above, we’ll definitely be looking at 48 hour minimum admission for protocol.
We ran into several favorites today….Pain Dr Alan, nurse Ash, childlife Cody, & Dog Gideon. It’s the people (and dogs) that make the endless days tolerable.
As Tate’s team of specialists continues to grow, I’m grateful for their willingness to work together to get Tate to a more functional state. Our goals right now are simple: Days filled with more than just sleep, increased strength and stamina so Tate can “do” more and awake time that isn’t centered around pain and nausea management.
Pancake Fundraiser: Some have asked us to post this. We're truly humbled by our members who organized this and their ongoing love of Tate and our family.