Whispers and Rounds

I hate whispering. Unless of course its me and my girls whispering to each other and giggling uncontrollably at what the other had to share. Then I happen to love them, but today they just make my heart pound a little harder and beat a tad too fast.

Rounds just ended. Praise God we have a pleasant surgeon on this week who has a kind way about him. I don't, I guess I've always kind of liked this one. He's not Dr. G, but then again he's not the difficult one either. So, rounds are pleasant. Except for the fact that the things we have to discuss are mainly the life and death of my youngest daughter. I just can't see that as pleasant. Anyway, here we go...

Ashley's bilirubin has climbed once again. 11.5 this morning. They are ready to investigate. It won't be easy, it won't be fun. It is going to require lots and lots of amounts of her blood. How are going to get this blood? The best guess at this point is finger sticks and "milking" the large amounts out of her fingers and toes. I can't even describe to you how very painful this will be. Not to mention frightening for Ashley. God, please allow this pic line to flow like we have never seen. It will requires days and days of testing. Our hope is to find out that she is unable to hemolisize(?) the massive amounts of blood products she is requiring. Its disgusting to be hoping to be diagnosed with a new disorder. I can't even believe I'm hoping for this. If we find out that she has a new disorder then it will be treatable. I asked "how did we just wake up with a new problem all of a sudden" the answer "side effects of the medications we have started the last two weeks". Oh...I knew there was a reason Dave is so passionate about what he does. Nothing comes easy. There will always be a price to pay. You can't pop a pill, fill a prescription, swallow a syrup and correct what is happening inside of your body. It doesn't work that way. My, sweet Ashley. I'm so very sorry. So sorry. I guess I'm saying pray for a new blood disorder. I guess.

The alternative is liver disease. A whole new ball game. One they don't even want to get into at this time except to say, "we don't want to find out this is the reason for the new issues". Its not easy. Its miserable. We lived with Ash once before and it tried to steal her away from us in those early days before transplant. I cringe at the thought of what this would mean for the life of my littlest one. Basically its another death sentence.

The main goal of this week is to establish venous access. Dr. B just shared with me that without access in her upper body it may well be over. If this graft can't recover then the possibility of re-transplant is very slim. "That is if you and your husband would even want... WE DO", I interrupted. WE DO, WE WILL" Then he again said we must establish if its even an option. If transplant is not an option, he did say there are 3 large veins that feed the liver and we could aggressively place a central line in one of them in order to give her TPN. She would live as long as her liver survived and as long as those veins were opened. Once they are gone, she would be too.

The conversations, the thoughts, the plans, the discussions surrounding Ashley rock me to the very core of my being. We did this already, she did it! She won! She went home and lived. How is this even happening? What is going on? I hurt so bad. I do. She's the most beautiful child you've ever known. Her spirit is so contagious. She loves her life. LOVES IT! She swings and plays and signs and listens to music and WALKS TO THE MAILBOX! The day we witnessed that we just KNEW she was ok. SHE HAD DONE SO MUCH MORE than anyone ever thought she would. Dave and I KNEW life was going to be amazing as we watched her grow up. How then are we now having conversations about her possible death? I don't understand.

Don't you think she's beautiful this morning? I just love her. I LOVE HER SO VERY MUCH. God PLEASE heal her. PLEASE!