So Very Tired
We are home. As is Blake, Allie, and Ashley. At least we are sort of home. We are in our driveway living in our RV for a couple of days. Not a huge deal, just a little exterminating taking place that isn't safe for Ash to breathe(and not good for the rest of us either) so until we are sure its an all clear we are residing in the driveway. Its close enough to home to be considered home for me. I'll take it.
Ash has had a good day. She's been happy and silly. Giggling in the car seat on the drive and enjoying her freedom. Her gut is not tolerating the tiny amount of feeds we have going so I will be cutting that 8ccs back to 5cc over night. So discouraging. I honestly don't even know how to explain it, but I do know that some of you are transplant moms our short gut moms and you understand the dance we can't seem to get to stop. Anyway, I'll take a happy, smiley, little girl any day. Just knowing the relief she must be starting to feel from the pain blesses me immensely.
Tomorrow will be a long day of coordinating plans, talking to doctors, surgeons, transplant teams, and pharmacy. Yes, we will be managing this from home. As long as we possibly can. If at any point Ashley's organs seem to be in danger then you all know the drill. I'll be packing our bags for an extended stay in a little place I don't like to talk about that often. So lets not, ok? I'm pretty sure this is a virus of some type that has her gut sick. We, with the help of our many teams of doctors, will try and ride it out. Ashley is so much happier at home(or in the RV for the time being) than she was at the hospital.
We are all exhausted. Really, really exhausted. Ash is already sleeping soundly on the bed. Dave has some work to complete at the office before the morning and so its going to be a late night for him. I'm currently at the office since we still have no phone or Internet service. Once I finish up here I'm off to bed. I think I could sleep for a full day and not even feel bad about it. I just wanted to let you all know we've made it home. Thank you for your kind words and prayers. I find great comfort in reading your words of encouragement. I'll talk to you when I can run up here and steal a computer from one of the staff for a few moments this week. Take care and God bless. Trish