Rona Updates: Little glimmers of hope

August 18, 2023

Medically speaking, this wasn't our greatest week. We still don't have cell counts, the viral counts ticked up again, and Rona required another procedure involving intubation on Wednesday to figure out what is going on in her lungs. We also discovered on Monday night that her feeding tube had exploded in her stomach, which meant a new feeding tube placement, and also explained why she hasn't been able to hold anything in her stomach for a few weeks.

With that said, it also felt like one of the more hopeful weeks we've had in a while. Despite all of what's going on medically, Rona is starting to act like Rona again. For the first time since the very first week of July, she is getting out of bed to move around several times a day, is interested in doing crafts and other activities, is being kind of naughty (in a fun way), and is holding full conversations. She wants to have a birthday celebration and asked us to sign her up for a homeschool pod so she can talk to other kids each day.

Last night, Rona looked at me and me and said, "I feel like I'm making cells." She said it again today. She has never been wrong about that before, so her hematology team is hopeful the weekend may hold some good news on that front. If she does not have counts by the end of next week, we will be going for a third transplant. This time, they will use Samtubia as a donor. For so many reasons, we hope we don't need to put Rona through that again. 

Here's to hoping the next update brings better news on the medical front...