How is She?
In one word...Beautiful.
Ashley Kate is doing ok. Considering that her body is broken, I think she's doing pretty well. Running some low grade temps in the afternoons and requiring some extra sleep. She can't seem to wake up before noon each day for some reason. Her liver numbers are high, but I think that may be becoming our norm. The liver tends to get tired when its functioning without a bowel. A "traffic jam" is the way things have always been explained to us. Not a whole lot we can do about it until she is re-transplanted.
I included this next picture to show you her drain bag. I usually work hard to keep this hidden in most photographs, but I wanted to ask the other parents out there if this was what life post ex-plant is like for everyone or if its just us. You can see the bag full of bile that drains out of Ashley's stomach through her g-tube. I leave it open to drainage 24 hours a day. The contents can be anywhere from this dark color of bile to a neon "anti freeze" color. We empty about three of these bags in a 24 hour period(some days more). Approximately 1500ccs of bile a day is what she loses into the bag. We infuse 1700ccs of TPN a day into her. So with all the loses of bilous fluids we have to run IV fluids at night to keep her from becoming dehydrated. Still with this draining, she vomits the exact same contents all day long. Her teeth have been damaged beyond any repair from the constant vomiting. I can't imagine what her esophagus looks like. She puts out basically nothing into her osotomy bag. Maybe once every two or three weeks she might have a flow of output from the the 3 inches of remaining bowel, but not often. It seems to us that her stomach basically has no ability to empty into that tiny piece of bowel. I assume it is blocked.
Ashley is happy. Joyful. So smiley and sweet. We love her sooooo much and are enjoying our days here at home with her. She has an appointment Wednesday with her Shreveport team to get the all clear for travel before we leave on our trip. This is a huge undertaking for us to get her there and details are still being worked out. I'm feeling a little stressed out by the situation since we've been working on it for weeks and weeks and still exactly one week before we leave its not all finalized. UGH! If for some reason our medical supplies and meds can't get out of the country then neither can we:( I'm trying not to worry about it because its worth every single phone call to give her this opportunity and to show our big kids that overcoming adversity in life is what you do.
So this is a busy week for us as we prepare to pack it up and experience a little family time away from the daily grind. So excited about what adventures lie ahead for us.
Believe it or not once we return from our trip we will begin finalizing plans for Ashley's 6th birthday! Living one day at a time and at the end of the day looking back on it with a grateful heart that our tiny girl was given another. So...to our friends and family I'll say to you...Save the Date...Saturday, August 6th at 6pm. We are planning to pull off the carnival party we designed for her last summer that she missed. I know it may seem like its a ways off, but trust me the days slip away faster than I can keep up with. Its just a little over 2 months away!