Post BMT +37
Day 100
Post BMT +37
Day 100 of this admission! I felt like we needed to celebrate like they do in kindergarten. Tate wasn’t quite in the crafting or party mood, so I got myself a vanilla latte.
In reality, it was a hard day. Most importantly, Lilly desperately needs prayers. She’s growing yeast in her blood cultures, has a clot so will lose her central line (a big deal as Behcets makes maintaining IV’s a nightmare) and is suffering from neuro effects in addition to fevers and rigors. Still in the PICU, she had to miss her senior prom both at school and the mock up in the hospital.
I feel like I can hardly follow with Tate news as although our day wasn’t great, we have so much to be thankful for. So for a quick summary….Tate is still needing iv mag infusions nightly despite increasing her oral mag. She didn’t attempt food today. Her labs are now reflecting malnutrition, so back on tpn (IV nutrition.) Throat ulcers are making her pretty miserable. They worsened overnight so she didn’t sleep much and was pretty restless with both pain and nausea today. No progress on the pain pump as we’ve paused due to the acuity of the new ulcers. Lots of discussion today as to why she is getting them again with no real answers. Always just speculation in our world. Always two sides…could just be a “normal” part of post transplant or could mean her Behcets manifests differently than originally thought and transplant can’t help it. Or, could be cmv starting to rear it’s head. Only time will answer this and all else. Tate is puffy and retaining some fluid again. Tomorrow is a day to try again!
Above all we thank God for all our blessings and ask him to protect Lilly. Please pray for her!