We spent the entire day at Georgetown today: Get up at 5am, get everyone ready and out the door by 7am to get to Georgetown by 9am. Off to the lab... Four sticks before they were able to get her blood, she only cried toward the end of the last one. Then, we had a 2.5 hour wait for our clinic appointment upstairs. The good news is that she kicked the EBV (Epstein Barr Virus) that has been a concern for the last month... Gone! "Undetectable".
Epstein Barr "came with" Ryan's liver. He probably had or is a carrier for Mono and the virus is dormant in his liver. When her immune suppression level is higher, it can rear it's ugly head because her body is less able to fight things off. EBV can be very dangerous to a liver graft. A lot of "liver kids" spend a decent amount of time in the hospital trying to resolve an EBV issue. Somehow, Kai managed to escape that!
The GREAT news is, they decided she's doing so amazingly well, that they are decreasing her immune suppression by half! This means less stress on her kidneys, so it's less likely she will also need a kidney transplant in the future, and that she will be able to fight off illness and infections even better... Less time in the hospital! She will also be less susceptible to certain cancers (Melanoma, Leukemia) that are linked to Prograf/Immune suppression. Also, they proposed fewer labs/clinic visits once her medicine adjustment has stabilized! Dr. K (aka- "The Wiz") seemed really excited... as are we!
No comments:
Post a Comment