Ashley's Story

She will leave fingerprints all over your heart



I've been doing my best to ignore the fact that this is where we sit. I've refused to allow myself to really take it all in. I've tried to pretend that it wasn't real, it isn't happening, we aren't here. This morning I have no choice but to find a place of acceptance in my heart.

Dave slipped away at 4:30 this morning and that is the exact moment at which my heart knew. Its real. We are here alone again and no one knows how very much that hurts. It just does. If I could see the light at the end or if I only knew that it would be just a few weeks then maybe it wouldn't hurt so much? I have no idea how long it will be until I hold his hand, or hug Blake tight, or kiss my beautiful Allison Brooke. They are not here, but Ash and I are indefinitely.

The fact that it is quickly approaching the holiday season is even more painful for us. It almost seem as though Ashley and I are destined to be away from home during this time of year. Allie and I were supposed to do the fall gardens today and purchase the pumpkins to make our patch in front of the house. She wanted a scarecrow for the front yard and Blake wanted Dad to make a batch of his famous pumpkin seeds. We had plans to take Ash to the pumpkin patch for the first time and take photos. Even the best laid plans can fall apart. Ours surely have. Thanksgiving? A trip to Colorado's mountains with Dave parents. It seems impossible now. Christmas? The surprise trip for our princess to see "THE castle" and all the magic of the holidays. I'm so thankful we bought trip insurance! Dave reminds me there are 71 days until our holiday flights, but I know we have NEVER made it out of Omaha in 71 days. It almost seems impossible. We finally allowed ourselves to relax and actually plan a vacation. This we centered around things that Ash could enjoy, like lights and music. We also made sure that the "3" big kids would have a great time and as long as I have a good camera to capture it all then I am happy. It really was going to be a magical trip.

To pretend that I am "ok" with what has happened or that I don't cry tear after tear is a lie. I'm heart broken and hurt. Its just what it is.

On the other side of things, I know our Ashley is stronger than she has ever been. I hear her being grumpy at this early hour and I am grateful for her life. She is breathing without the help of a machine and for that I am so thankful. Will she be in a week or two? Only God knows. Truly, He is the only one who could answer that.

Rejection is a nasty thing. It will always be a possibility for her as long as she lives. Her body was not created with the organs that are inside of her. Because of this her immune system sees them as an "invader" and tries to kill them. She takes a drug to suppress her immune system in order to live with her transplanted organs. A little over a month ago our doctors asked us to decrease the amount we give her in an effort to preserve her kidney function. The drug protects her transplanted organs but is toxic to her native kidneys. We do monthly labs to test the level of the drug in her blood stream and since Ashley was 2 years post transplant they decided it was time to lower the dose. I was nervous about this. Let me explain. Exactly one year ago we received the same phone call to lower the dose to this same amount. Exactly one year ago she rejected her small bowel. So I had reason to be nervous, but the likely hood of it happening again? I thought I was being paranoid, but still had reservations. Dave and I talked about this on more than one occasion last month. Yesterday while sharing this "observation" with the surgeon on rounds he nodded his head and told us we were going to have to find a combination of immunosuppresants that could keep her out of rejection while protecting her kidneys from future damage. Did the lower drug level lead us to where we are? Again, only God knows. Is it any ones fault? Absolutely not. Dave and do exactly what we are supposed to do. We give Ashley excellent care and have never, forgotten to give her this medication. She has never been fed anything or been given a drink of anything that would put her bowel in danger. We are more than careful with her. Her team of doctors were doing their job. Looking at the overall picture and trying to protect her. For quality of life down the road she needs working kidneys. If we don't protect them then we may be looking at another set of transplanted organs in her future. We are all doing the very best we know how to do. Rejection is rejection. She may or may not recover her complete transplanted bowel. The dangers of losing this organ or section of this organ are very, very real. The dangers of it becoming life threatening are very, very real. We attack rejection by jumping in full force to an extremely high dose of steroids. It is a miserable time for Ashley. She is miserable. She is growling and screaming and unhappy and just...miserable. If it doesn't work then we try it again. If it still doesn't work then we try one more drug. We can try two rounds of it also. If it doesn't work then...there is nothing that can be done. The organ will probably be lost and she would require another transplant. In the process of treatment we pray that she doesn't acquire an infection. If the lining of the bowel becomes weak(as they did a year ago) then it can "leak" bacteria into the walls and it can cause the life threatening conditions she came through last September. If they are too weak the bowel will leak into her system and she could become septic with an infection in her blood stream that spreads throughout her entire body. It is an ugly fight to come back from. Many, many things could happen over the next days to weeks. At this time she is doing well and we are learning to love the "uglier" side of her as she figures out how to cope with the enormous amount of drug in her system that is making her crazy.

I'm doing my best to settle in to our room. I plugged in our "famous" air freshener and its already beginning to smell of home. Other than that I'm a little unprepared and still in shock. Ashley does have her sheets and blankets. Her clothes and a few toys. I try to keep her surrounded by her own things to make it easier for her. I have my own blanket from home too(although I'm wishing I had grabbed my grandma's quilt instead) and it makes life a little better. Give me a few more days to figure things out and I will try and really move in once again.

Thanks so much for your encouragements. Ashley is here. I can smell her, touch her, kiss her, and hold her. That's all that really matters to my heart. The surroundings I can deal with as long as she is here with me. God is still good. He is still working. I just haven't learned how to accept the things He brings our way without filling my pillow with tears each night. Even though its painful surely its for our good. He promised it would be.


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