Its Quality We Want
To be honest its her LIFE that I WANT, but I don't get to decide that. So I'm deciding to give her a shot at quality for the remainder of her life because its the only compassionate thing I can do for my daughter.
We are going to remove Ashley's transplanted bowel this afternoon. Its the only option that is even acceptable at this time. My other choice was to keep her sedated for the rest of her life. "Snowed" was the actual word the surgeon used this morning. That's not living. Ashley deserves to live. Happy, pain free, comfortable. Even if its for only a short time. I want to restore her joy.
The operation is HIGH RISK. There are no easy procedures left in her life. They can't promise me anything. They don't know if she'll be here tomorrow, next Wednesday when she is to turn 5, or a next month. Without line access we have come to the end of the multiple choices. We don't have any other choices.
Your prayers that Ash might come through this procedure infection free are of the upmost importance. Her greatest risk in removal of the bowel is the escape of its content into her abdominal cavity which would lead to an infectious bout of sepsis and without line access we could not support her through this. Its the scariest day of my life. So much worse today than the day I placed my tiny girl in their arms for transplant. We are out of options.
The pain can't continue. She's not living. She's enduring. Its not acceptable. This is the only thing I can do to try and bring her back to her life, to our home, and to herself.
I can't get a hold of Dave. He's out with Blake and his friends this morning and although he knew we were close to making this decision I still wanted to share with him that this is what it has come to. He needs to know. We have some time. Two cases before her. If you see my husband this morning please ask him to call me. I can't get him to answer his or Blake's phone.