That Explains It

My sweet Ashley has been so miserably thirsty for over two weeks now. I mean clawing, crying, signing, begging for water. It has been heartbreaking to watch. Finally they have given in and allowed us to give her water as long as we keep her tummy connected to suction and let it come right back out. So we give her the sips of water in a tiny med cup and her thirst is quenched for the few seconds it takes for her to swallow. Then she begins signing "more water, more water" and if you aren't filling the cup fast enough she follows with a very precious, "please". None of this had made any sense to us. Ashley won't drink anything when she is home. Never asking or needing or even being able to force a drop into her mouth.

This morning I was baffled again as I sat on the edge of her bed filling her tiny cups when the nurse explained to me that it was just a side effect of the rejection process. She is spilling through her bowel walls and depleting electrolytes constantly and this is very normal. Sad but normal for all those who are in the throws of severe rejection. Now I understand. It doesn't matter that we are constantly "filling her tank" with replaced electrolytes and fluids. Its just part of the process. A miserable part of this thing that is trying to take our child from us.

Ash will be receiving blood yet again this morning. And platelets. And then thymo. Her liver is struggling to hemolocize(?) all of the blood products she is receiving each day and this is causing the rise in her bilirubin number. Its also turning her skin yellow again like she was before transplant. Her eyes are dark and sunken because of the assault on the liver as well. So far the liver enzymes are functioning normal and in normal range and we are praying it stays this way. It will be hard to determine if her body is rejecting her liver as well but we feel as though we are covered with this aggressive form of treating with thymo.

Ashley's abdomen has been painfully distended for about the past 48 hours with no stool output into her osotomy. She is 7lbs!!! heavier from the swelling. Its been unbearable for her to be moved, rolled over, or propped up. Praise God this morning things began to change a little. Her tummy is a little softer and stool began to come out again. I am encouraged that her comfort level may get better throughout the day. Her lungs are having a lot of difficulty filling with enough air to supply adequate oxygen to her blood because of the pressure from the distended bowel in her abdomen. I really think that if she continues stooling throughout today that her respiratory status will improve as the pressure comes off. I'm hopeful for improvements in her level of comfort today.

Allison and I are going to spend some time together outside the hospital this afternoon. Dave's mom is going to sit with Ash and be the water "filler upper". It will be nice to step outside. I haven't left Ashley's hospital room in 13 days. I need the fresh air and the sun to feel alive again. I need to smile and laugh and love on my Allison. I know Ash will be safe while I'm gone. Her nurse has to monitor every 30 minutes for all of the infusions today so she will be close by or in the room all day with Dave's mom. I think this is a good day to step away. I'm praying I can turn off the worry and just enjoy my time with Al.

In the midst of all that is going on I remind myself daily that God does love me. He does love my Ashley. He is still in this with us. Even if I don't feel all of these things all throughout the day I still tell myself the truth. This is truth. It has always been and will continue to be. The hurt and the pain sometimes try and overshadow the truth I know, but its still there. It is. I know my family is worried about me, but I know what the truth is even in this time of crisis. I'm ok, so please don't worry about me. We can still do this. I know deep in my heart that Ash can do this. I believe in her and I believe in the power that God has.