Day +27

Yesterday during rounds I asked the team about a plan to go home, they said that we would start to transition her IV meds to oral, she'd need to be able to eat a drink a bit by mouth and would need to be off IV pain meds - sheesh, I thought, we can do that! They even went as far to say we'd likely be going home next Monday!
I have been taking the eating thing slow with Georgia, she hasn't had anything in her stomach in so long I didn't want to bombard her system with too much, this coupled with the fact that late yesterday afternoon was the first time they'd pulled back on her IV nutrition so Georgia is yet to actually feel hungry... a 14 month old who doesn't feel hungry isn't going to eat a lot. She is now taking (reluctantly but taking) four oral meds and we are on a consistent ween of her pain medication - good progress right?
This morning during rounds they talked about her ANC dropping to 2000... it can bounce around they said... should I be worried... no it is normal to have it bounce... um, ok then why do I feel concerned? They said her numbers are still all within normal range but I got the sense they would like to be seeing something different. Then they talked about the fact that she'd eaten a little but they'd need to see more progress or we'd need to talk about other ways of getting food into her stomach... ah, here we are, the dreaded, makes my blood pressure rise, talk of an NG tube (feeding tube). This is a new team, not one that saw my rant last time the NG tube was mentioned... I said, oh, you don't know me and that topic... I'll get Georgia to eat. Then it was casually mentined that oh likely next week sometime we'd go home. The frustration that I was pleasantly surprised not to feel this entire time dropped on me like a ton of bricks... it's the mixed messages and feeling like you can't count on anything that makes me crazy. Deep breath, clear communication with the team... deep breath, clear communication - wish me luck.
Over the last day or two I noticed Georgia had a little cough, I noticed it the first time that she ate and chalked it up to her system getting going again... it hasn't gone away so today I mentioned it to the team. What followed was a "nasal wash" aka saline being squirted up her nose then sucked out all while I held her flailing arms and legs... they do this to test for viruses. We won't know the results until late this afternoon so until then, but more likely until her cough goes away we are in what's called isolation. We aren't allowed to leave the room, the nurses have to get our food from the floor refrigerator and from here forward if food is brought into our room it can't go into the community fridge. Any hospital staff member has to wear a special gown and mask when coming in our room.. all in all it sucks. Georgia is pointing to the door and so badly wants to be out socializing. On the upside, we were able to move to a slightly larger room so she has a little more of a play space - hours of entertainment? probably not but we'll do our best.
All of this said, my stress and anxiety level are high right now, tomorrow afternoon Georgia has a bone marrow aspirate - standard day +28 stuff. This means sedation which will forever tear me up inside, they will look to see how the new marrow is engrafting, they will look for her cells versus the donor cells and they will look for any presence of disease. I so desperately want to be done with this and resume our "normal" (what is that anymore) lives.. one word keeps coming to mind, marathon.