...my sweet Ash has not had one moment of relief tonight. Not even a brief period of rest. The last 4 or 5 nights she was getting about and hour to an hour and a half when the times would fall just right and she could receive dilloted, lortab, and benadryl all at the same time. Although it was brief we would all breathe a sigh of relief as we listened to her quietly rest. Tonight there has been no combination of medications to ease her discomfort. Nothing is giving her any help. They just gave a dose of ativan to try and take the edge off enough so she could sleep. Nothing happened. She is so, so exhausted. I am so, so exhausted.
The look in Ashley's eyes is fearful. She hurts so much and doesn't even know why. The looks that come across her face, not even a moments peace, are so very hard to see.
I sat next to her bed at 2am, then 3 am, now 4am, and just whispered, "do You see her? Are you hear? Can You help her?" What else is there to say? I just don't even know how to pray anymore. So I told the Father that I don't know what to say to Him. I really and truly don't.
Ash is not even close to the end at this time. Many of you are telling us to let her go. It doesn't work that way. There is no plug to pull. No machine to turn off. My daughter is strong, vitals are amazing, breathing like a champion through all of this pain. I'm not sure that I can help anyone understand where we sit. We are facing miserable, heartbreaking decisions over the next few months. Ashley's life will not be long without a miracle, but she is very much alive. When they tell me she may die they aren't saying that its going to be today. No, first she is going to hurt like very few have ever experienced. There is nothing any of us can do. Nothing! I'm not keeping her alive to suffer. I'm not doing any of this. I have no control over when her last breath comes. Neither do her physicians. Again, there are 3 options. Healing and bowel recovery which will give her the best possible outcome and perhaps eventually restore her quality of life. Re-transplant. Which will be the hardest mountain she has ever had to climb and still she may not make it. Denial of re-transplant which we would then take her home with this diseased bowel that is causing all of the pain and keep her going on TPN until the site is gone and she passes from inability to give her nutrition or until she succumbs to a horrible infection that spreads systemically throughout her blood stream (sepsis). The last two options will bring her great, physical pain. Currently she has no quality of life. This initial process of rejection is the most miserable pain I have ever witnessed. Dave and I didn't choose this. We don't get to choose. This is what it is. Like they keep reminding me "this is severe rejection. She's going to suffer."
Our only option in this horrible situation is to keep loving our baby. We are stuck in a no win situation at this time. She has to heal or go home to wait, survive the next 6 months before an evaluation will be done, or suffer until death takes her from us. I'm not sure that anyone really understands where we are. Perhaps I'm not able to make it easy enough to understand. Maybe I shouldn't be sharing her story. At least not this part of it? I just don't know how to not write it all out. I've been doing it for so long.
Please don't write to us and tell us to let her go. Please don't tell us we are making her suffer. Do you really think we would choose to torture one of our children? I don't get to decide. I'm just her mommy. I can't stop this. All I can do is pray when the words come. When they don't I just sit and stare with the most empty feeling you can imagine. Please don't try and comfort me by saying she needs to earn her angel wings. Children don't die and become angels. They just don't. It may make people feel better to think of death in this way, but I know that they do not. Its not Biblical. I hope I'm not offending anyone by sharing that. I just know it has to be said. Ashley will not become an angel upon her death. She will go to be with the Lord, but she will not be made into an angel. With all due respect to you if you do believe this way I have to share that I don't believe that. Please forgive me if I offend you.
Ash and I aren't getting dressed for rounds today. I don't even care. I'm so tired I can't imagine hauling my stuff down the hall, out of the unit, and into the shower. I just don't care. I hope this doesn't become a habit. I've only ever done it one other time in 5 years and that was two weeks ago. I just don't have what it takes to put my "game face" on right now. They can all stand outside and discuss what they think they need to. I'm staying in my room, next to Ash and hopefully at some point mercy will be granted and she will fall to sleep.