Day +18

I wasn't feeling up to posting anything tonight but happened to click on an old post from back in October - I read through the comments offering prayers, love and positive thoughts and decided I needed to post in hopes that those who read it will send all of that support again.
We are still in the PICU making very little progress - today Georgia's weight and belly measurement were exactly the same. The decision was made to stay the course for now but will soon need to be reevaluated if things don't improve. This afternoon she was fluid positive which means she is taking in (through her IV) more than she is peeing out. The next step would mean surgery to put in ANOTHER central line, this one bigger to support what's called CRRT, Continuous Renal Replacement Therapy, basically dialysis. This would take the pressure off of her kidneys and do some of the work for them pulling her blood out, flushing the fluid off and returning it to her - the theory sounds great, the process and procedure to make it happen are things that I do not want to do.
Life in the PICU is drastically different and more challenging - I can't use the bathroom in our room so I have to go outside the unit, I can't eat in our room which has meant scarfing down some food while Georgia has to stay in the room with either grandparents or a nurse. I am not allowed to use a cell phone except to text all of which make this lonely process all the more isolating. They have one to one nursing so our nurse spends the vast majority of her shift in our room. Sleep was limited on the SCCA floor but with vitals every two hours and constant monitoring it has now become almost obsolete. We took a walk around the unit this evening to get a little change of scenery, clearly not something commonly done up here. I have to say that I did feel thankful to be in our shoes as we passed by rooms with babies hooked up to twice as many IV's as Georgia but by the time we wound up back in our room I allowed myself to say, just because someone else may have a more serious reason to be up here doesn't mean I should take this lightly.
Tomorrow brings a new attending transplant doctor, it's hard to make these changes through such a delicate process. For the last couple of weeks we've had the attending that we'd worked with in the SCCA... ya, ya the former said arrogant ass turned Handsaker family supporter. This afternoon I thanked him for putting up with me, he said, you're her advocate - we certainly made strides in our relationship and thank him for all that he has done for our family.