Day +223

The ability to predict what happens next is null and void in this process - for better or worse I have given up the idea that I might know what's next.
Monday morning we had a clinic appointment at Children's.. no labs, this was a weight check because the threat of Prednisone was looming, if Georgia hadn't gained approximately 10% or 2lbs by our next SCCA appointment that was going to be the next step.  I went in with a list of questions about Prednisone, some about the actual drug, others were asking the doctor to guess how much of this, or how long for that.  Georgia's weight was up slightly but not close to where they want her to be.  Our doctor said she'd been thinking about ways to avoid Prednisone and asked if I would be open to an NG, or feeding tube.  These two topics, Prednisone and an NG tube are two that I have gone round and round with doctors on and been adamant about avoiding... now I was faced with needing to choose one.  Our doctor said she wanted to stack the deck in Georgia's favor, do all she could to put weight on her to avoid not only Prednisone but the whole host of other antibiotics she would be put on as well.
The facts are these:
- Kids post transplant do better and are at a lower risk of infection if they have more weight on.
- If Georgia can tolerate the feeds it will tell the doctors this is less of a GVHD issue, and more of a toddler challenge.  If she doesn't tolerate the feeds and has diarrhea and/or starts throwing up it will tell them this is a GVHD problem and Prenisone is needed.
The doc said she would have to confirm with the SCCA that this is something they would be open to first, she said she'd call me once she'd heard back.  I went home and did my best to be logical - avoiding Prednisone would be better for Georgia's whole body, if we can just get a few pounds on her maybe we could move past this issue, we need to know if this is GVHD or not... all of this logic did nothing for my heart.  Looking at my baby girl I find myself again wanting to ask for her forgiveness, to tell her I'm sorry she has to deal with something new.
It's Children's Hospital policy not to sedate kids when an NG tube is placed, they instead restrain them, often wrapping them up in a blanket so they can't fight and sticking a tube up their nose and feeding it down into their stomach - this is nothing short of asinine.  The trauma that these kids have to endure is too much, and asking that of my 21 month old daughter who doesn't understand just doesn't work for me.
Georgia is due for an MRI on her leg in September so I asked that they place her NG tube while she is sedated for that proceedure.. there was some hemming and hawing but I found out this morning they were able to get us in on Tuesday so she will be sedated when it is placed.  I've heard from other parents and doctors that these tubes often come out - or are pulled out and need to be placed again, this would not be done under sedation.  I'll be honest, I don't have high hopes for Georgia ignoring her NG tube they way she did her central line, that I was able to tuck away in a shirt, this will be taped across her face and dangle behind her ear. 
If I think too much about it I start crying, I wish I could explain to Georgia this will only be for a month or two but she doesn't understand.  Most of all I don't want her to feel defeated, like these things will never end - she is so good about taking her medicines, the powder in juice, the pills in food, the cherry flavored, the medicine flavored, all of it, I just don't want to ask one more thing of my baby girl but I have to.
About a week ago I told my sister, I just want to get through September - an MRI, our next SCCA appointment, more labs and now an NG tube, something I couldn't have predicted.  Tomorrow is day one.