Suffocating

The looks the, the glances, the questions coming my way each time someone passes me are beginning to weigh on my heart. Its heavy around here. I feel the weight of sympathy and concern from those in the halls weighing me down. I'm suffocating in it all. The tears come. They fall. They can sneak up on me in a moment out of no where. I fall apart as soon as the door closes. Sobbing so hard that I can't stifle the sounds from escaping to the other side.

We've had a very, very tough morning. The venogram was not good. The 30 minute procedure took 2 hours and 30 minutes. Trust me when I tell you that my heart races faster and faster with each tick of the clock. I shake on the insides and do my best to not let it show on the outside. My big girl sat on my lap and cried tears into my hair hiding her face all the while. NO words were said. I just held her and let her cry and allowed her to be scared. What kind of mom does that? I can't tell her not to be afraid of losing Ashley Kate for I myself am very, very afraid. The results brought the same tiny radiologist who did her best not to cry with me out in the hallway last week to tears. From what she shared there is very little hope when it comes to securing any type of access above Ashley's diaphragm. Without that access we lose. Its not an official report and there hasn't been a discussion with any member of the transplant team, but I don't really need those things. I can see it in the eyes of all those around me. They don't plan on re-listing my daughter. They can't help her again.

Our only hope at this point of seeing our baby grow up is a miraculous healing of the rejection that is raging inside of her transplanted bowel. I know that now. Its written all over the faces of our team.

Is she healing? I don't know. I pray she is, but my baby slips farther and farther away from herself with each passing day. She is so weak she doesn't even open her eyes. There is sadness on her face as it tightens with each pain. Her output is the highest its ever been and its bloody. She is still bleeding 48 hours after the distention began to go down. Its really, really scary. We have one more dose of thymoglobulin. We aren't running it today. Waiting until tomorrow.

After the procedure had begun in interventional I received a call letting me know that her labs had returned and her platelet count was only 15. They immediately stopped and infused to full units of platelets into her before continuing.

I don't know if Ash is going to survive this. I truly don't. I can't imagine my life without her in it. I still believe she has what it takes to be one of those who survive and life a full life. Call me crazy, or naive, or whatever you will. I just think she was supposed to grow up and not die at the age of 5.

This afternoon I was asked by one of the nurses what I was going to do. I looked her in the eyes and I said, if they can't help my baby then I'm packing our bags and we are going home to live. That is exactly what we will do. We will live the remainder of her days in our home surrounded by all that she loves and trusts. I'm suffocating. I swear I am. The pain is so great. There is no way to help you understand. I just can't believe that she can't do this. I can't. Ash can show them all how big her God is. He could still use her to change this world before our family is destroyed. He could. I'm begging for a change in her bowel. Begging for her life. Once again, I find myself on the floor begging that the God of the universe will spare the life of my youngest child. I never thought I would have to re live this again, but here we are.

Is Ashley going to die today? NO. I don't believe she is. Is she going to die soon? I don't think so. Not in the next few days or weeks. Is she going to die? Yes. She is. We all are. I'm just counting on a miracle. One more time.