Day +34

Three days ago Georgia's ANC was about 2000, yesterday it was just over 9600 and today it was about 2900... this is a pretty accurate picture of my life right now, one of the nurses said the 9600 was likely a false reading... also an accurate picture.
The team has been watching her tacrolimus level in hopes of getting it somewhere between 5-10%, this critical immune suppressing drug can't be switched over to an oral dose until they strike the right balance. We were told that if she was at 5% we could go out on pass yesterday... level came back, 5.7% - pass, right? No we'd like it to be at that level longer before we take her off the IV. I thought I might burst so I took a walk after putting Georgia down for a nap... nothing in this process is concrete, not the lab results, not the information, not the goals... nothing.
Georgia's eating picked up a bit yesterday but was back down again today. A nutritionist back from maternity leave came by after rounds to discuss the NG tube. I like her, she unlike a lot of the people that are so intimately involved in the decisions that are made for my daughter is a mom. I told her that I understand why we're having the discussion, I don't want Georgia to be malnourished but I want to give her a fair chance. I proposed that we be given the chance to go home and if by the second SCCA visit (approximately four days after discharge) if Georgia wasn't eating enough we'd talk about what needed to happen. I talked to her about how hard this is and she told me that she'd cried at her baby's two month shots so she couldn't imagine how hard this is. The team has pushed to make this happen tomorrow because Georgia will be sedated for her bone marrow aspirate, otherwise she will have to be awake during the "procedure". If you ask me sticking a tube up a child's nose then down into their stomach is something that most certainly should be done under sedation of it's own. Ultimately though, the decision of if we are able to leave the hospital under Georgia's current eating conditions is not mine, but the teams.
I am so tired of being on the side lines of critical decisions that are made for my child, each morning I get knots in my stomach as I wait for the team to round on us - what will we be told we need to do today? Like so many things in this process I get the distinct feeling that once you start on an NG tube you can't just stop, you have to get the ok from about 800 strangers first.
Today Georgia's tacrolimus level came back. 5.1%, yep, the nurse said... you can go on pass! Go figure. I was thrilled to get out of the hospital and go home, right after Georgia's chest xray.
It snowed a little on the drive and once we hit the West Seattle Bridge Georgia fell asleep. At home we woke her up, she looked around and around, didn't take long to point to the stereo, I turned it on, set her down and she was dancing. A pass is only four hours so we made some dinner, played and I took a much needed shower. The pressure of all of this has been mounting for some time now, she needs to eat... all eyes on me, she needs to take her meds... all eyes on me, someone will need to know how to give her IV fluid at home... all eyes on me. This is what I want to be doing but the overwhelming pressure has me wound up pretty tight.
When I got in the shower this evening it was the first time I felt like I'd been by myself, the public showers at the hospital having me rushing through them so fast I forget to take a moment so tonight as I thought about having a moment to myself, the first real one in 43 days I started to cry. I stood in the shower bawling, not wanting to go back, feeling uncertain about what to do about Georgia's eating and feeling really, really tired.