Gut Feelings

Dr. G. rounded this morning. She is Ashley Kate's transplant surgeon. There are 4 of them on the team, but Dr. G. was the one who took my 11 lb. 14 month old baby from our arms and opened her up that night in September. I guess perhaps thats why we have a connection. Its almost a friendship. She stops by our room to visit even when she's not on call. We swap stories about our children and she always brings pictures and sits down to look through mine. She new Blake would be playing baseball somewhere this week without me telling her so and she could not get over the beauty my Allison has grown up to be. She looked through the pictures of Ashley Kate walking with her walker and living normal life. So... I guess if you can actually be friends with a member of the transplant team that Dr. G would be the closest thing I have to one.

I say all of this to say that I trust her. I trust her with Ashley Kate. If Ash has to go into the OR I want Dr. G to be the one who takes her there. So I knew that she would be on service starting today because she stopped by a few days ago to let me know. At that time the two of us were hoping for better news to come from pathology, but neither of us expected it.

When she walked in the room this morning she touched me on the shoulder gave me a small smile and we started talking. Little stuff first leading into the big white elephant in the room. Ashley has a yeast infection. A miserable burning, itching infection. Assuming its from the antibiotics she's been given the last few days. She hadn't been on an antibiotic for over 2 years and so with the massive immuno suppression she is receiving its going to par for the course. Moving on to her hand injury. She was very concerned and called in a plastic surgeon to look. She assured me she would stay on top of it and that she was so very sorry. Then her central line that was placed this week. Ashley's body is bruised from her groin up to her breast on the left side of her body. It is sore, it is ugly, it is not right. We are concerned because it is bleeding from the exit site of the catheter. It shouldn't be bleeding at this time. She is very concerned about Ashley's lack of venous access. Without access we can't treat her and ultimately we can't save her. She is considering taking her into the OR this week to see what can be done. Lastly we moved on to the rejection.

Her gut instinct. Ashley may not survive this. If she does she will not have the life she once had. The odds of Ashley walking in her walker, going to church, having school, riding horses, like she did last year are not high. 50-50 chance the graft will survive, but even then it probably will not function fully like it was. She expects her to be TPN dependant. Meaning that her nutrition will come from IV not her feeding tube. The trouble with this plan is the lack of access. When Ashley's two remaining sites fail then she will no longer be able to live. There is no crystal ball. I told her I want Ash to live. I'm not asking for perfection. I just want her to be able to live in her home, be happy and smile again. She agreed that is what the entire team is wanting for us too. She encouraged Dave and I to develop a plan and to start figuring out how I'm going to live here again while Ashley recovers away from the family. She said if things went perfectly the minimum amount of time we will be here is about 2 months. I will not be home when Blake starts high school and Allison starts her new middle school. She wants us to prepare our children for this.

Ashley is at great risk for her cancer to return. She has already tested positive that the virus is still in her blood stream. They are collecting a count of how much is there and we will have to continue monitoring it because of how severe we are treating her rejection. We are basically giving her body an open door to develop PTLD once again. We have no choice but to do what we are doing.

I broke down. I wanted to know how this could have of happened if we were doing everything right. We did it right. No short cuts. No anything. Dave and did what we were trained to do every single day of her life. She said she KNOWS we did it right, but this is what transplant is. Out of no where it happens. It doesn't matter how careful you are. The body rejects organs that aren't its own. No one knows why.

I could keep going but I'm not. I am emotionally spent. I am now more determined than ever to get Ash home. We have a 50-50 chance of survival with the graft. I'm taking the 50% that points her home to live a full and happy life. I'm not going to accept any thing other than that until it is slapping me in the face. I can't imagine a life without our smiley girl. I won't.

The knowledge that our family is going to be separated once again is so painful. The thought of sending my son to high school and not being there is too much. Knowing the fear my beautiful Allie has of changing schools is crushing to me even if I were going to be there. Now its unbearable. My heart hurts so much for my children. For my husband. For all of us. I just kept telling Dr. G. that this is someone else's life. Its not ours. Ours isn't like this anymore. Our baby is growing up and she is strong. This is not the way it was supposed to be.