A long day ahead

In all honesty I'm not looking forward to today. Its going to be another long day at the hospital. Ash and I will have no visits from Dave or the kids today. No breaks from the crying. No ability to step away even if for only a few moments to try and get my heart and my head to stop splitting open from the constant sound of her hoarse little cry. Its only fair though since my sweet girl can't step away either.

Last night Allie so sweetly said, "I can't do this anymore. I need to leave. I can't sit here and listen to her cry and cry for something we should be giving her and we aren't. Please take me home or give her a drink. Its making me so sad."

All I could do was agree. It is so very sad.

Dave and his parents are driving the kids to Dallas today to set up camp in the RV next to our friends at the lake. Then Dave and his dad will drive back to Longview. His mom will stay with Blake, Allie, and a friend from our ball team that I assured his parents weeks ago would be welcome to stay with us while they had to work. I never dreamed I would be unable to attend the National tournament. The one they look forward to all season long. Anyway, opening ceremonies is tomorrow morning. Check in is 10am, then the skills competitions begin. They will end the day watching the Rangers play. ( Knowing my beautiful Allison will be at that huge ballpark without mine or Dave's eyes watching her every move makes me cringe inside.) The first game of the tournament is Wednesday morning at 8. I am so hoping for things to do a major turn around in Ash's current state by then. If she improves over the next two days then I will change places with my mother in law. If not then she and I will both stay put.

Ash doesn't look so good this morning. It was a very long night. She spent the entire night vomiting, retching, and gagging. NO sleep for either her or Dave. Her morning labs are the worst set yet. Nothing is balanced, nothing in range. Her albumin is very, very low and we know she needs an infusion. Her fluids are seeping into the tissue because there is nothing to keep it inside the vessels. She has become very dehydrated in the last 24 hours only adding more injury to her kidney function. She is relying on IV support and still putting out massive amounts of stool. Her gut is spilling and spilling and spilling. Last night the kids and I prayed the stooling would stop enough so that we could just get her home. We aren't asking for perfect, just improvement. Oh how I hope their prayers are answered. It hurts to hear them pray for their sister and I can't keep the tears from falling because I know that we don't always get the answers we hope for. Our house is so unhappy without her here. Blake has to pass through Ash's room each night before going to bed. My favorite thing in the world is to hear him stop by her bed, tickle, snuggle and wish her goodnight. Last night he just walked past and shook his head. We all want her home. I have been able to come home each night this admission while Dave has been ever so willing to snuggle up next to our girl in the hospital bed. That of course will stop tonight since he has to be in the office early in the morning.

I don't know the course from here. I do know that her carefree days seem to be behind her. How we can go from such stability for 11 months to this is still mind boggling to me. It isn't fair. I know life isn't supposed to be fair, but this still makes me angry. A stupid virus contracted last month has damaged her transplanted bowel and we have no guarantees that it will ever work the same again.

I'm going to ask for the picc line in rounds today. We have to do something to get things turned back around and although there are risks involved we need to make this easier on Ashley Kate. She has been stuck for labs for the last 7 days in a row. Her body needs a break. Our last day of "normal" was May 12. I laid my head on the pillow that night and not a worry could be found. My girl was fast asleep in her bed just down the hall and a smile was still on her face. I slept peacefully that night and haven't had another night like that since.