May 10, 2024
2 Years 2 moths
Tate is still struggling with her adrenal issues. We continue to see low blood pressures, fatigue and nausea and now rashes. and give her steroids accordingly. Yesterday her Dr’s called her down to the hospital concerned she could have an infection. Something is stressing her body. It doesn’t sound like a big problem, but actually can be life threatening when you don’t have adrenal glands that work and a body that can accommodate additional stressors. Yesterday we ran labs and blood cultures. I was told to be prepared for a phone call and admission. But what is coming back so far looks reassuring. And as long as we keep Tatum topped up on IV fluids and steroids, and she gets lots of naps in, she looks pretty good.
The last couple weeks have weighed heavy on me. I can see Tates body struggling and I can keep her going with meds and fluids but the weight knowing something could shift enough overnight and she won’t be covered and could just not wake up makes it hard to breathe. Her primary team of specialists know me so well. I’m given so much leeway to stay home with Tate but they also recognize when it’s becoming too much. I feel respected and heard. I’m just so grateful. We’ve moved mostly to telehealth appointments as it’s just easier and Tate has a nurse that comes in weekly for labs and I do the rest. But yesterday it was nice to just be with familiar faces again. People who understand all the unsaid emotions of where we sit and what’s in front of us. I’m feeling grateful. And a little less alone.
Tonight is hospital Prom! We are praying hard against anything resulting towards an admission before that and doing all the things to make for a fun, safe night. Tatum is SO excited and Keira is being the amazing BFF and sister she is as her date and bringer of all the fun. Photos to come!