May 25, 2024
2 Years 2 months
This week was long and draining and I’m so happy we are at the end.
After Monday’s very disconcerting conversation with one of Tate’s providers, I heard nothing…all week. Continued low BP’s, increased migraines and pain is well….a pain! This is the difficulty of a large team with multiple opinions and a lot of human nature. Tate had a neurology appt Thur that we moved to telehealth as her BP was 75/50 and she felt too lousy to travel. A GI appt phone call Fri ended up getting cancelled but led to a supportive conversation. Tate has one provider that always lights a fire and she did just that on Friday. So I got a phone call. Tate has a standing invitation for admission. About 1/2 her providers feel it’s dangerous to be home and the others feel it’s my call when we need more support. In another situation, it wouldn’t be up for debate. But with competency at managing her iv fluid and steroid needs along with lab access, the responsibility and decision falls on me.
Wondering what I’ll find when I walk into her room each morning is emotionally draining but so is an admission at a teaching hospital when you have an unknown issue. It’s almost June=new residents. If you know, you know.
The bigger issue is 1/2 the team feels the implanted pump is the cause and the other 1/2 says no way. So we do nothing until a care conference takes place and the team can agree, she gets better, or she gets worse. That’s the real world of complex, chronic, medical. I’m battling a lot of anger and frustration this week.
There is good, Thank the Lord, raise a hallelujah news! Tate was accepted into the program at the Undiagnosed Disease Network in Salt Lake City, Utah.
THIS has been a whirlwind already, but a huge positive. They are very hopeful they will figure more out. The incredible part of this program is that you are assigned to a local-ish to you site, but your kiddo is presented to all 12 sites across the country. Thats A LOT of very smart research brained Dr’s putting their heads together. This week alone, there’s a geneticist who works out of Italy that is focusing on the MT8 side of things and yesterday I spoke with a neuroimmunologist who also is a GI specialist that focuses in Ehlers Danlos and dysautonomia (both familiar with Tate) Crazy specific! She was amazingly kind and feels both the brain deterioration we’re seeing and the pain progression are all immune related. I just cried tears of gratitude and hope and relief. To be validated in that belief after 9 years was huge. We have others on Tates team who feel it too and have treated it as such, but due to the way hospital undercurrent is, and lack of science advancement in neuronal antibody isolation, nobody has been willing to ever say it so confidently. And when treatment doesn’t work, the “idea” wavers.
Our genetic coordinator became my bestie this week after many hours on the phone and having to relive much of the last 9 years verbally. She is so kind and was a gift this week.
My emotions fluctuate depending on which way I’m looking….hope and gratitude in one, fear, sadness and pure exhaustion in another, anger and frustration in another. It’s a reminder to just look up. It’s the only way to keep from spinning in circles.