Still Waiting

Ashley Kate and I are still waiting on the team to round today. We are anxious to hear what they have to say about allowing us to stay over here or if we have to move back in with patient population on the floor. I really can't tell you which way I think things will go because I just don't know.

I saw Ash's x-ray this morning. I'm not a radioligist, but it looked to me like there was a re-accumulation of fluid on her left lung. That fluid seems to be our number one enemy since transplant. Keep in mind that my eye is untrained to read the films, but I have seen them a time or two and it looks pretty suspicious to me. The right upper lobe in my opinion looks ok. Not great, but ok. Then again I did not see yesterday's x-ray so I have nothing to compare it to other than my memory of what it has looked like in the past.

Ash doesn't feel well again today. No smiles. No playtime. I am making her sit up in hopes of having her help clear the junk out of her lungs, but she isn't too interested in much of anything and she is so weak that she eventually allows herself to fall back on her pillow. I was able to capture a shot of her finding that "flower" page her daddy wrote about over the weekend in her new book. Thank you Camille. She sure does love books and from the looks of it she is going to love flowers just as much as her sister does.

She has no fever, but seems extremely pale to me. There is no sparkle or real life to her eyes. She is still requiring oxygen support and it her need for it has actually gone up a little bit. Not much, but a little. Her daddy said it sounds like she is headed in the wrong direction and I am afraid I would have to agree. We had SO hoped that she would recover and come home sooner rather than later. It is now seeming like the hope for Sunday's travel has all but vanished. To say I am not disappointed would be lying, but I am trying to stay strong and determined until she gets better.

Last night was really not bad and I'm not struggling today. I will probably require a short nap this afternoon, but other than that I feel great. I prayed and prayed and prayed last night. I so desperately want God to take us home. I want it now, but if that is not His plan then I have to get to the place where all I want again IS His plan. I'm not there yet. I know I need to be there, but we have been away from home for 22 days and it is starting to seem like a very long time. There is really never an easy solution for Ashley Kate. Things are either really good or really bad. No middle ground with this little one.

My heart is a little sad today as I had hoped that morning would return our little girl to breathing effortlessly once again. It did not. Her treatment schedule continues and will keep on continuing until we see drastic changes in her lungs abilities to function all alone again. Try holding your breath. Now try breathing as quickly and as shallow as you can for a couple of minutes. I wonder if this is how Ash feels as she struggles for air? Something that comes so easily to most of us is so difficult for her. Oh, how that makes my heart ache. I so badly want easy, carefree, effortless days for my daughter. I want grins and giggle to take her breath away once again. Not diminished lung capacity. I just want to take her home.