Day +57

Forever changing our focus, late Wednesday we got confirmation from pathology that Georgia has mild upper gut GVHD, primarily seen in her stomach lining and lower esophagus... treatment, steroids. We were told about a randomized research study that uses both the standard dose of 1mg per kg along with a trial dose of 1/2mg per kg - the thought of having her on less sounds better but after reading through the paperwork I had questions.. it said your doctor may choose a lower dose, could we do the lower dose outside of the study? The nurse answered as much as he could but with some questions remaining I asked to talk with our attending. Overall for upper gut GVHD there are two options typically used together from the get go - beclamethazone, a "topical" steroid that Georgia drinks and coats her digestive track.. the other is prednazone, the steroid that terrifies me.. we've seen other kids on this, they can be little crazy people, crying (I mean like wailing crying) all day for no particular reason, they are typically really hungry and have that really round "steroid face". The doc came in and after clarifying a few things he said he'd been thinking, we could start Georgia on just beclamethazone for a few days and see if her eating picks up, if not we'd add the the prednazone.. this is why I love the current attending so much... a plan tailor made for Georgia, what a concept! Success on beclamethazone will mean one thing, eating, we have until Sunday/Monday to make that happen.

With the pressure on I started offering Georgia more and more food immediately... it came with the typical head shake and her saying "mo" (aka no).. I'd move on and try again later. Today we were able to go out on pass and headed to Grammy & Grandpa's house.. I went to take a shower and when I came down they were remarking that she seemed like maybe she was on steroids... beclamethazone isn't really absorbed into the system but I've heard that it can be seen in the little ones. Georgia was happy, just a little turbo. We were able to get her to eat some.. back at the hospital I kept offering and she kept eating - not a ton but certainly more than I've seen in quite a while! I am cautiously optimistic that this will be the answer... prednazone not only scares me for the external factors but there are risks - increased risk of infection, risk of high blood pressure and blood sugar.. there would be chest xrays and close monitoring so if we could avoid it I would be a happy mama.

The big challenge over the last two days has been Georgia's PIV (peripheral IV) by yesterday early morning she was on her third site in two days - they kept blowing out and the nurse said that it was because her TPN was going through it. She said that if they kept up the TPN she'd need a new IV daily. That's ridiculous, I asked her about some options and fortunately the team was willing to go with one of them so she's off TPN until Monday, we're using a less harsh substitute that has fewer calories but can do the job.

I am hoping for a quiet, calorie filled weekend as we wait for Monday when her new central line will be placed. The Infectious Disease Team reviewed Georgia's infection information and said that as long as her cultures continued to be negative we could do a seven day course of the antibiotic, that would mean we could potentially go home Wednesday.

This has certainly been a longer stay than I anticipated but yesterday it became so much more bearable... Hunter is back! Our buddy Hunter is back for another round of treatment and as luck would have it is in the room next door. Georgia was so happy to see him, within a few seconds Hunter had his mom's phone out playing music and they were both wiggling up a storm.