Day +54

I haven't written in a few days feeling beat up and uninspired. When we came back into the hospital I knew about the daily routine of doing blood cultures - each day we waited and each day we were told that the bacteria had grown back. They have tired different doses and different methods of killing this common type of staph but without success. Today during rounds we had our first negative culture, once we've had three negative cultures our 10 to 14 inpatient antibiotic stay will start. Knowing we'd be here for a while longer I decided to go home and pack some things, the first time I have ever gone home while Georgia has been in the hospital. Feeling like we'd finally hit day one of the antibiotics I was cautiously relieved. While I was home I got a call from Brian - the physicians assistant came by, bacteria grew out again. I just melted, why is this happening? Because bacteria continues to grow back they need to take her central line out, they believe this is where the bacteria is sticking.

Tomorrow Georgia is having her rescheduled endoscopy and sigmoidoscopy to look for GVHD so while she is sedated they will pull the line... they will also place a peripheral IV for the time being. She will stay on antibiotics until the cultures don't grow back for three days then they will have to place another line.. surgery. With a peripheral IV things are different, her TPN will be altered and they won't be able to do her daily blood draws from that line, this means that someone from the lab will come by the room each morning, typically around 6am and draw blood from her arm.. we started this process this way and it's hell - the IV has to be protected, it is annoying to her but the blood draws are the worst, my poor little one will be woken up to a needle going into her arm and is older, wiser and stronger now so I can only imagine how heartbreaking it will be while I have to hold her down.

I can't seem to stop crying, I cried all the way back to the hospital, I cried to a nurse once I was back on the floor, and tonight I cried to a bunch of nurses all who know this was the worst case scenario. I just want everyone to leave Georgia alone, she needs a break but the hits just keep on coming.