I answered a call from transplant this afternoon. I'll be honest and admit that I don't always answer those calls. Sometimes I let the phone ring, listen to the message and see who it is and what they have to say before deciding if I'm up to calling them back. Its the truth. Today I was blessed and it was a good coordinator. The best in my opinion. The one whom I know truly cares about my baby and my family and who I have seen work very, very hard to get us back home. I breathed a sigh of relief when I heard her voice. She's just easier to talk to then some of the others. We aren't supposed to have favorites. I know that. They work as a team. The coordinators, the surgeons...we are told not to have favorites, but truth be told I've got them in both areas. Some days are just easier in the transplant world depending on who is on the other end of the phone line.
Anyway, the last time I spoke with them was Monday afternoon just moments after the doctor's office had called to tell me I had to get Ash admitted as soon as possible because they had to do emergency surgery that night. I was hurriedly throwing things into a bag when the phone rang. I gave a quick rundown of what was taking place to the best of my understanding and left them hanging as I ran out the door. So today was a follow up call to see how Ash was, if she were still in the hospital, and what the surgeon had seen. Then came the part where I got to tell them about the cultures showing that the infection was pseudomonas. Not my favorite part of the conversation, but it had to be done. Now its documented. They actually document all of our conversations. The surgeons now know. The four surgeons who have yet to decide of they will list Ashley Kate for another transplant or not. Yup, I had to let them know she has pseudomonas. Ugh!
I also had to inform them of the new issues with her central line. Not fun. Its documented now too.
Basically these things can keep her from being listed. Its the truth. It stinks, but its where we are and what we are dealing with currently.
I told the coordinator we still weren't ready. We didn't want to hear their answer yet and we weren't ready to have her listed just yet. "We are enjoying her. We are watching her live. We are listening to her laugh. We just can't give that all up just yet. Not yet." Although her new line developments may change our thought process depending on how things progress. The coordinator was very supportive. She said, "You know the truth. You know what can happen. You know what its going to be like. You know too much. Its ok that your not ready yet. I can understand that. Let us know when you are."
I left the conversation thinking about her words. She nailed it. We KNOW too much. We aren't new at this. We've been through it before. We know what lies ahead for Ashley Kate. We also know that it won't be an easy road. Its going to so very hard on her. Physically and emotionally. Its going to test our faith and our spiritual walk all over again. It is. We know it is. Dave and I were talking Monday as she was in surgery and at one point he shared with me that Ashley's life and situation had helped his faith grow in tremendous ways and yet it had also tested his faith and made him question a lot of things he thought he knew. I completely got what he was saying. I'm there with him. Our faith has been put through the ringer and there are days when we are left hurt and confused and scrambling to hang on to all that we thought we knew and believed. I don't pretend to have it all figured out because I don't. I have far too many questions and so few answers.
We are in an impossible place and still aren't sure at which time it will be right to change directions. For now though our plan is to enjoy our daughter. We plan to allow her to be 5. To laugh, to play, to be carefree and to be pain free. We plan to give Blake and Allie time with her. We plan to give ourselves more time with her. In the end though we will have to take those steps back into transplant in order to have any chance at continuing those things. I just can't imagine putting her through it right now though. I can't. She is so sweet, so happy, so safe. How do I steal all that she depends on from her? How will I ever make her endure the fight again? How? I know that we will. In time. I know that the other option is death if we don't try and that is simply something that we can't live with. We have to try and give her a childhood. We just do. We have to fight for life. Anything else is so contrary to all that we promised to do as her parents. Oh, how I wish this was not happening. How I wish I could keep her from ever hurting again. My heart is so tormented. It truly is.
Knowing all to well what we are up against is making it soooooo much harder the second time around. In many ways I wish we could be naive again. Just naive enough to make it to the other side of re-transplant. I don't want to know all that I do. The knowledge is proving to be too much.