Post BMT Day +111
Post BMT +111
It’s Monday which is a BMT clinic day and labs. I draw labs off her broviac central line and courier them to the hospital. This saves us from an early 8 am appointment. The labs are showing on MyChart usually before we even get to clinic. It’s so nice to walk in and have a great idea of what the plan will be. Tates labs looked so great today. Liver labs are still elevated but have come down so much! Her white counts are finally back in normal range as we continue to wean the steroids. This is the first clinic visit post discharge that it feels like everything is headed in the right direction. PTL!
The liver MRCP test is still happening despite the insurance delay. The liver biopsy the BMT team now wants to wait on. Tate’s liver Dr. May still want it done, but per bmt, “Will have to convince us.” due to infection risk.
Tates gut is rapidly improving. She is trying to eat more and more, with some things going better than others. We are hopeful that her GI team will cut the tpn volume and calories on Wednesday so we can get off it soon.
I’ve been dreaming this last week (and researching) for a big family vacation in January when all the kids have off. It has been years! But we learned today that January will likely still be too soon. We also were told that any large gatherings, e.g. weddings, church, etc are on the same schedule. This is disappointing but as I pointed out to a tearful Tate, it’s improving her health that is keeping us out of things, not progressive Ilness. There’s a huge difference in perspective and the greatest aspect is there’s hope tucked in between all the missed events and opportunities. That’s been missing for so many years. So…tonight we are grateful through the loneliness and isolation that keeps close company on this journey.
Our little friend Nathan, got his central line removed today. He’s about a week ahead of Tate in the transplant timeline and has done remarkably well. We are so happy for him! Pray for continued health and great bone marrow biopsy results.
Tims dad recently had his knee replaced and is struggling post surgery. He was moved to the cardiac ICU tonight for closer monitoring. Prayers for him as he strives for healing and stability.
We you Tate’s Tribe! You’re celebrating with us, sharing our tears and happiness fills our hearts. God Bless you all.