Ashley's Story

She will leave fingerprints all over your heart


Good Morning Beautiful!

In the early morning hours our sweet Ashley began to wake up. We didn't sleep much with lots of commotion going on around her, but little by little she started to move here and there. This morning she opened her beautiful eyes. She's made progress overnight. The only thing holding her back is the collapse of her right upper lobe. This morning they realized the placement of her breathing tube had shifted and was not oxygenating both lungs. As a result we have some collapse and she is now requiring a little more respiratory therapy. The thought process in rounds was that it was all up to her at this point. It could be as early as tomorrow or later on in the week. Biggest concern was fluid weight increasing. She is back up to 19.6 kilos. We are using diuretics to pull of a little each day proceeded with albumin infusions.

The transplant team called a meeting for tomorrow with me included=) Their idea not mine. We are beginning to lay out yet another plan for home. We have a line. Now she just has to breathe on her own and then we plan on taking her home. I'm hopeful it will be accomplished. Lots of planning and logistics to get worked out to make the transition as easy as possible.

The wound on Ashley's foot is horrible. Really it is. Thankfully we see signs of life in the tissue and it did not die from lack of blood supply. I think we are realistically looking at a couple of months before it heals. I'm just so grateful the tissue has blood supply to it. Yesterday this remained an unknown. The pain from the injury is great. Its bothering her even through the massive amounts of narcotic.

I know many mistakes have been made over the last 6 weeks with Ashley's care. Trust me Dave and I know better than anyone else. This is precisely why we firmly believe Ashley will be the safest over the next few months in our home. A hospital is a place to come to for treatment, its not a place to live. Our firm stand on this issue is what causes the most criticism of us on this journal. So...I guess I'm just going to say that its ok if you disagree with us. Maybe you would do things differently. Maybe you wouldn't. I think its hard to know until your facing what we are facing. Human error. It can happen just as easily at home with Dave and I caring for Ash, but the amount of "human error" will be drastically reduced just because she won't have the same amount of people touching her and caring for her. Agree or not, she's going to be safer in our home for the upcoming days, weeks, and months. Our goal is to string together 3 good months before we start "calling to chat". I have no issues with forgiveness. NO ONE in this institution is trying to harm our baby. We KNOW this. Forgetting is my problem. We are all human, we are going to make mistakes. Mistakes that cause great harm and suffering at times. Its having the ability to forget at what hands these mistakes are being made is where I'm struggling. I don't want to place her in the care of those same hands. There are members of this staff that I trust with her life. There are others I do not. There are some with whom I did and no longer can. That's being honest. As her parents we are ultimately responsible for what happens to Ashley Kate and we are the ones who have to live with the heaviness of our decisions. Its not an easy place to live.

Ultimately we are fighting for a quality of life for Ashley. Never forgetting that she is fragile and very ill, but just as importantly remembering she is a little girl with feelings and a right to be happy.

As my sweet friend always says, "I'm just sayin...


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