Post BMT Day +96
Post BMT Day +96
I can hardly believe this is the week Tate hits day 100! She was inpatient so long, the few weeks since discharge have gone quickly. The days are long, but the weeks have gone quickly. Thursday is the big test day and Friday is Day 100. It’s a lot of buildup but in our case doesn’t necessarily change much….
Great news on The liver GVH….Tate doesn’t have it. Key labs that should’ve risen over the weekend to support liver GVHD actually decreased with the new medication that was started Friday. We are thrilled and so very thankful!
Based on the above, we were hoping for a further steroid wean or to start decreasing her anti rejection med. But Tate still has other labs that are keeping everyone watching closely. In general, her platelets continue to drop, her BP continues to be high despite doubling her BP med last week, HGB is slowly dropping and LDH continues to be slightly elevated. They’re watching closely for TMA once again as well as lower gut gvh due to the GI symptoms that increased again over the weekend.
Tates glucose was 344 this morning with the first draw. Second lab brought it down to 250. She’s regularly over 200 most days even pre steroids. Steroids will raise that higher. Labs are easy though and it’s monitored several times a week. We were told pre transplant that it was a matter of time before Tate became insulin dependent with diabetes. Our prayer is transplant halted the progress and we are left only with the damage that happened pre transplant. Time will determine the outcome.
We also may have gotten an answer to Tates increasing skin sensitivity and feelings of burning and pain. Her anti rejection med level (tacrolimus) was quite high today. Skin gvhd also can cause the above symptoms so a little hard to tell. The positive in a sudden high level is that her gut may be starting to absorb better and we get to cut her dose in half as she was on a solid dose. Less to wean later! This med bypasses her stomach as we put it through her J tube into her small intestine. ANY improvement in how her gut functions is a win.
Tate’s trajectory to healing isn’t a straight shot, but she is making progress.
An area that she is doing so well in is PT! She was able to stand for a few minutes at a time while playing a game with Caitlin. Tate’s fatigue level was heightened today as carry over from the tougher weekend, but her muscle strength continues to improve.
Thank you for the prayers for Tim. He’s still testing positive for Covid and still quite sick. We are hoping in a few more days he’ll feel measurably better.