Thyroid Storm
You wouldn’t think it’s a big deal but apparently it’s a huge deal. Enough for poor K to be in and out of the hospital, on 4 heart pills a day, high dose steroids, and a drug that can suppress her bone marrow! As of last week she was down a total of 35 pounds since the beginning of August. We have to take her pulse ox multiple times a day, if it is 150 or over she will have to go inpatient again for IV heart meds. This morning it was 148. She’s not allowed to do any activities either. Maybe that’s why her room is so messy! Turns out she has Grave’s disease. If these pills work they will try to wean her in 18-24 months. If they don’t work she will go inpatient for a week and then have her thyroid removed. She is maxed out on the antithyroid drug so I guess we will see. We go for labs today to check her T4 and CBC. It is possible that she could end up on GCSF again 🙁 Not sure she could handle that psychologically. Two weeks ago she was neutropenic, last week her white count was down to 3.7 but her neutrophils were just above the threshold. We are back to our pretransplant protocols. Any time she is sick she has to have a cbc run immediately to check her counts. Needless to say we had no idea that your thyroid could be life threatening much less make you so sick. It’s been a hard pill to swallow, I mean she has an auto immune disease yet she still isn’t fully engrafted. I think the counts are part of the difficulty. To be anemic and neutropenic 3 years out just sucks but they say it is all caused by her thyroid not her marrow. It could always be worse and we are so blessed to have the best ped, endo and BMT docs in the world that have all been working so hard on her behalf. If these pills work it will take 6-8 weeks for the symptoms to subside! Please pray for our patience and understanding with Kimbell. She has every single symptom of a thyroid storm and it is very difficult. I will say she is thrilled with all of her clothes! She got boxes of old clothes out b/c everything fits and I mean clothes from 4 years ago!! We went to Cali two weekends ago and she had a wish shirt on. She is so frail everyone thought she was on her wish trip!!
On a completely different note please pray for the Denson family, their son Luke gained his wings a few days ago. As many friends as we have lost it never gets easier. The only solace is that he is running and playing in Heaven like every child should be, no more needles, no more pain.
Love,
P, J, K and Stitch
About the Author
1 thought on “Thyroid Storm”
Comments are closed.
Our prayers are with you. Angel Arabella is growing up fast before our very eyes. We think she was the termite in the litter! She is so smart and happy and we ? you!