New, yet familiar territory
Ashley Kate's platelets dropped another 9,000 over night. We are waiting for a call from her physician to let us know things are underway for her admission. Our hope is that she goes in for her transfusion and is then released home tonight. We live a few miles, literally just 3 or 4 from our hospital and getting her there quickly if need be is not a problem.
I say this is new territory for us, but yet we've been here before. Many, many years ago. Ashley's life from age 6months to 14 months was spent being transfused every few weeks due to a decline in her platelets. Its been a long time since we have faced this issue, but we have seen it before. It was before transplant, before she was given a healthy liver, but it has happened. I guess its most concerning to us because its an indication that her liver is becoming sicker and sicker with each infection she battles. It causes a deep pit to form in my stomach. Watching the progression of her condition each time she battles an infection is what we knew would eventually happen, but had hoped that she could just keep going and going and going the way that she has lately. She is SO happy. Feels SO safe. Is SO content to be home and not living in a hospital.
Life inside the walls of a hospital is not living. It is not quality of life. It is merely existing. I am willing to help her endure those days if it means that she has a chance of regaining her quality of life, but I am not willing to give up even one good day. I can't do that to the little girl whose eyes sparkle and shine with joy as she takes in the world around her. She can't see the world from inside those walls. I will push and I will fight and I will do whatever it takes to bring her home. I will never stop fighting for a life for our Ashley outside of the hospital. Its the only way I know how to parent her.
I say all of these things to express the place we find ourselves in today. Fighting for life for our daughter and stopping at nothing to provide that for her, but always at the forefront of our minds knowing we may ultimately lose precious, irreplaceable time with her once we "pull the trigger" toward transplant. There are NO easy answers. There is no advice to be given. My heart is breaking daily as I watch her express such joy knowing all along that her joy will be short lived because of what lies ahead. Ashley will have no understanding of why?or what? we are having her go through. Her mind does not comprehend bowel transplant. It does however comprehend pain and fear. This is what torments me the most. I can't help her understand why she will have so many ouchies. God did not create her with the ability to understand that. She will understand that I am not keeping her from it and from those who seem to be causing it.
The call from transplant yesterday has caused my world to begin spinning out of control once again. It is spinning so fast that I can't hold on.
I can't see myself taking her back at this time. She has SO MUCH left to do, to experience, to enjoy. She is just so happy here at home. Although I can't see it happening now, I see that our hands are being forced by circumstance and we may have to go soon.
This infection is not good, but Ashley's vital signs are rock solid. She is not dying today. She is battling an awful infection and holding her own. She needs platelets. Her body is gobbling them up and she's not able to compensate quick enough by herself. She looks like a monster. I won't hide that fact. Her face is not recognizable. Its scary to watch what this is doing to her. Still, I know she is in there and even though her eyes are unable to open up from the swelling she still giggles and asks us to make animal sounds in her ears. She still wraps her arms around my neck and places those precious hands on my face as I whisper those sounds into her ears. Oh, how I LOVE my daughter. More than I can express. I want the best for Ashley. Only the best. Unfortunately the road to achieve her best possible life is a long, scary, rough one and its all to familiar.