Ashley's Story

She will leave fingerprints all over your heart


Sinking In

Little by little it is beginning to sink in. Ash is in the most difficult place in her short life. Never has she lay without a bowel. No bowel, no transplanted organ. Just an empty space inside her abdominal cavity. I'm not sure how this works. I know a few children who have been in this condition before, I just don't know of any who have been here without access sites. Today nothing was done to secure a sight. No ideas. No real direction. We are just sitting and waiting while someone tries to develop a plan.
She currently has a very short triple lumen threaded into her right femoral vein. This is enabling us to support her through her recovery. She looks good. Not the old Ash, but so much better than the one who has been suffering the past few weeks as we attempted to stop this process with Thymoglobulin. We had a 50-50 chance at being successful. We just happened to land in the wrong 50. Its sad. It really and truly is. The obstacles before us are bigger than we have ever faced, but face them we will. For as long as the Lord allows her to breathe we will take them on one at a time and try to give Ashley Kate a chance at growing up. My heart is sick at the thought of not succeeding and I am trying to focus on today not what tomorrow holds. Today she is here.
She is open from top to bottom. She has 6 wounds on her torso. Some major, some minor, some infected, some draining. All requiring different dressings to be applied throughout the day. She is doing the very best she can under these circumstances. She is in pain. A lot of pain, but compared to unrelenting pain she was in prior to last nights ex0plant she is improved. She and I slept this afternoon. 4 long hours of uninterrupted sleep. The most we have had consecutively in a month. I woke up to find that just as Dave is experiencing the nightmares don't go away when our eyes open. This is real. This has happened to our Ashley. We are going to figure this life that we have been thrown into out. Together we will figure out how to stumble our way through no matter what happens.
I did speak to both of the older children this afternoon. They are shocked. Surprised that we had them remove the organ we so desperately need for her. I assured them she was doing better without it today than she was with it the previous 2o something. Its scary. It scares Dave and I so how could it not frighten Blake and Allie? We did not talk about all the details, we just assured them she was ok today and that we would bring her home as soon as we could.
I guess today I'm just grateful. Grateful that she woke up. Grateful that she survived this far. Grateful that my girl is here for me to touch, to kiss, to love. As long as she's still here then there is at least some hope that God is still working in her life. He is. As hard as the struggle I'm having with Him is, I trust that He is at work. I just hold my breath a little as I wait to see what He is going to do next.
We've got a journey ahead of us. I always thought we had the journey behind us, but now I realize its never going to end. Its not. Our goal for our daughter has and always will be a life full of quality moments and memories that can never be replaced. My hearts desire is to have more of the same with our sweet Ashley. He granted my hearts desire the day He handed her to us. I know He cares. As badly as I hurt at this time in my life, I do know that He cares. I hope and pray that He doesn't take her out of our hands and back into His. Just a while longer. I need her a little while longer.
The next week will be a daily struggle as we watch her fight her way back to being strong. She is at a very high risk of infection due to the nature of this surgery, but so far she looks good. Her vitals are very, very strong. Her kidneys are functioning. Her blood pressure is good. She is still on oxygen and fighting it every step of the way, but I think its because her abdomen has a 7 inch incision that is still opened. Breathing deeply is very difficult right now. Our expectation is that as the incisional pain begins to improve over the next few days that her oxygen requirements will cease. She has been fever free and after 24 hours that is a good sign. Your prayers that she remains this way are so appreciated. Ash has a new ostomy sight. It is on the other side of her body and up very high. Because of its placement it will be impossible for Ash to wear any type of clothing other than dresses. As I stared at her new appearance this morning I just let that sink in. I guess I'm ok with that. I mean, at least shes a girl and not a boy, right?
Its a whole new life with a lot of things to figure out, but its life. For now its all I've asked Him for. Her life.


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