The results from Monday's EBV test and Thursday's regular prograf-dose-changed draw weren't so hot, but I don't know enough to understand the implications. The 3 liver numbers we watch all jumped from Monday to Thursday indicating she's gone back into rejection and the EBV was slightly up too. With Monday's prograf increase we're now dumping on a Prednisone increase. No IV but we are going from 2.5mg/day to 10mg. I've got a lot of questions for the doc on Monday. Does this delay going home? Do we have to start the Prednisone weaning process from the top? When do the EBV levels get concerning enough to risk rejection by lowering the anti-rejection meds? How long might we be on this teeter-tauter? Luckily we've got an awesome doc at home who used to be the head of transplant in Atlanta so we probably can deal with a lot of this at home. But do the local labs have the ability to run the tests Childrens run (they're pretty specialized tests)? As Kate just pointed out, at least the prednisone will make her eat more (steroids increase your appetite).
Shayna's still being incredible. She pulls herself up like a pro when you grab her hands. In fact people have so much fun with that that she doesn't get as much tummy time as she should. I was working on some tt yesterday and she can slither across the floor a few inches. I set my cell phone about a foot from her so she spent some time with her head raise contemplating it. She then lays her head down gives a push with one of her feet, lifts her head and reaches for the phone to see if she can get it yet. She did this a few times, mixed with rolling to her back for a perspective change and to check out another toy within reach a couple times, before she finally reached the phone. She reached a strength milestone yesterday too. She can now be on her hands and knees at the same time; before, if one end was up the other went down.
Update: I just talked with Shayna's nurse coordinator and she said we'll still be able to go home in 2 weeks because they can monitor everything from Roanoke. Yay!! (As long as things don't get worse that is.)
Roanoke can run the prograf tests which is one of hte most specialized tests. You'll have get into a groove of getting labs done before your prograf time knowing how long the drive will take, etc. Daniel, at ROA, if he is still there is wonderful. Awesome on the tt! And Dr. Hart is fabulous isn't he?
ReplyDeleteMan, the adventure just never ends huh? At least home is still sounding like a possibility soon! And yay pulling up and being on all fours! Aren't phones the best motivators? We've got the first video of Kiele slithering/scooting and she's going for our phone that I put just out of reach. Funny how they just love it. On our end Kiele and Kaleo are both finally healthy at the same time (one or both of them were sick for all of January), so now we just have to deal with teething (Kaleo) and night fears (Kiele), both of which cause waking up at all hours of the night. Oh the joys :)
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