I am going to do my very best to explain where Ashley's health stands today. It is a little confusing, and a little frightening, and a little overwhelming.
Ashley's bowel is in a dangerous place. The CT scans yesterday showed some light on to part of her condition. I have shared with you already that Ash's abdomen is very, very distended. Her bowel is shut down and is no longer allowing fluids, stool, etc, to empty into her ostomy. Why has this happened? Is it because of injury? rejection? infection? This morning this is what we know:
There are bacteria that have embedded themselves into the walls of Ashley's transplanted bowel. The bacteria are going through their normal life cycles while in those walls(although it is not normal for them to be there. I hope I am making sense) and are causing air or pockets of gas to form in the actual walls(the tissue) of her intestine. What does this mean? She is in a very dangerous place. One of three things will happen.
1. This is the path that we pray we travel. Her body along with the antibiotics we have started could attack and kill the bacteria allowing the bowel to heal and in time(we have no idea how long) return to normal function only causing the discomfort that she is in at this time. We truly hope that this is what happens. It will be the safest outcome for her.
2. The bacteria could cause the bowel to necroses(or die) resulting in a resection of the transplanted bowel(meaning that we remove the dead sections of the organ and hope the remaining will function). Essentially she could be faced with the exact same disease that she suffered when she was born called NEC (necrotising entero colitis). This is an extremely dangerous condition and many children die from it. As painful as that is to share it is a fact. Ashley survived the disease once and I believe God could bring her through it again if He so chooses.
3. The final possibility of her condition is that the pockets of air could rupture the walls of the intestine( a perforation) causing the content of the bowel to leak out into her abdominal cavity. This is extremely dangerous and would more than likely spread a toxic infection throughout her entire system. We then would be battling a dangerous case of sepsis.
Ashley's doctor was very honest with me this morning. She fully expects that Ash could deteriorate and become very, very ill in the upcoming days to weeks. At this time Ashley is uncomfortable and exhausted, but she continues to breath on her own and maintain good numbers all across her monitors. Her blood pressure is stable. For these things we are grateful. They do expect these things to change as the condition plays out. We do stand on very shaky and unsure ground. No one knows (except the Father) what will take place in Ashley's body.
The reality of transplant life is that it is not a cure for our children. It is a means to give them life and to give us time. God has blessed us with two of the most amazing and precious years with our daughter. He could bless us with two more and then two more and then two more, but He also may not choose to do that. I know that, but it does not make me wish for her not to be here with us. We were created with the desire to live and that is what I desire for my baby. Dave and I have always known that the truth be told our sweet Ashley Kate will probably not grow up to marry and have a family of her own. She may only be with us for a short period of time. Our goal as her parents is to give her every opportunity to live and to laugh and to be loved. We will continue to do that. I kiss her and I hold her and I sing to her and I pray for her. I want for her to be made whole and to come back home to our family. That is my desire for her life, and He already knows the desires of my heart.
Your prayers for our baby and our family during this time are so appreciated. It is difficult to find ourselves back in this position. I have moved into her room in the PICU and I will stay here with her until we are allowed to go home. Thank you for loving a tiny pickle who came into this world and stole her mommy and daddy's hearts. We love her more than I could ever explain. Please pray for Dave. He longs to hold her and to make her hurts disappear. That's just the daddy in him and he is hurting for her today. I am still numb from all that has happened this morning and for now I just wait being careful not take a moment of her life for granted. We love you guys. Trish