1 Year + 201
1 Year +201
Lots of back and forth today. We went from staying on iv antibiotics for 24 more hours to wait for last round of cultures, to being discharged today, to staying in our room switching med teams to moving rooms to prep for the pain pump trial. After all of that, they discharged Tate. Pain team has now pushed the trial another week or two and inpatient team thinks this was likely an adrenal crisis brought on by…..? The scary part of not understanding the why is that adrenal crisis is fatal if not treated. So this mama has more to learn and more nuances to pay closer attention to. But…I am frustrated.
Frustrated with the lack of clear communication regarding the pump trial. Frustrated with the delay while Tate continues to suffer and frustrated and sad that we’re in a place that a discharge happens with zero attempt to address the chronic issues leaving Tate in tears that she enters and leaves the hospital feeling like garbage.
So, tomorrow is a new day filled with new messages to try to regroup Tates team to get some momentum moving forward again. I am happy to hopefully sleep all night with no beeping and alarms and glowing lights from monitors and nighttime nurse visits. But am sad that next door to me is my Tate who doesn’t sleep because of pain and disease and all the things still left unaddressed. And after sharing a room, I always miss my little roommate.
Thank you so for all your love and support this weekend. We are grateful.