Ashley's Story

She will leave fingerprints all over your heart


I thought...

...for a long time about what images I would share with all of you today. Its a struggle for me to hold back, to not show the world the strength my little one has. If you could only look upon the images I have forced myself to capture you might be able to imagine the level of discomfort she is enduring.

I could have shown you the massive hematoma she arrived here with 3 weeks ago. The bruising and bleeding that kept her so uncomfortable she couldn't even straighten her leg for two more weeks. The bruising that was so deep we weren't even aware of the tunneled puncture wound that sat opened in the middle of it all.

I could have shared with you images of that puncture wound. The one that we are forced to pack using strips of gauze and the wooden ends of sterile q-tips. The very wound that brings me all the way to my knees as my daughter screams each time it is pulled out and re-packed.

I thought about showing you the stitched wound beneath that puncture that opened up on its own because her cellular structure was destroyed with her treatments.

I snapped pictures of and then wouldn't allow myself to post the images of the wound surrounding her broviac catheter. It is honestly a sight I have never seen before in my life. As far as central lines go this exit site is a disaster. It has an open, bleeding, oozing wound the size of a nickle with the catheter exiting out the very center. This is supposed to be kept sterile at all times to keep infection out of the catheter and to protect from sepsis. Its impossible to do with the way this wound was left from her last trip to the OR. It is a nightmare. The cleaning of this site requires me to stick alcohol swabs into the raw wound and clean it out the best I can. You can only imagine the looks of pain on my sweet girls face.

I chose not to show you the open wound, that is now beginning to heal, directly above the catheter that was not stitched closed when removing the previous central line. Why no one thought it important enough to not leave a hole in my baby's side is beyond me. Out of all the wounds, 4 in total, all on the same side of her body, in perfect alignment, this one is healing the best.

Images of her swollen distended belly are frightening to look upon. I'm told her bowel is so injured that it is swollen inside of her causing the distention of her abdomen. This is what is causing the majority of her pain. This broken, struggling, foreign, organ inside of her tummy.

I deicided not to share the pictures of her fingers and toes. Images that show the raw tips of all her fingers and toes left from all of her outward layers of skin sluffing off. No one knows why this happens during rounds of rejection, but for some reason the skin slips right off. Its making her crazy. She is constantly picking, pulling and rubbing the hanging skin off.

I'm not painting a very pretty picture in this post and I realize that. I also realize that this will serve as an honest account of what the transplanted life can look like. Scroll over to the left side of the screen a pick a few posts from January, or March or even May and see the other side of her transplanted life. What I wouldn't give to be back in those days.

Ashley Kate's fentanyl patch was increased to 37 mics per kilo this afternoon. This is in addition to her scheduled dilloted every 2 hours and her lortab every 4. All amounts have increased or times between doses have been decreased in an attempt to make her as comfortable as possible.

This is what Ash is enduring daily. Each and every one of these images are real. Very real. Her cries are what I listen to all day long, every single day. The looks on her face are what torment her daddy and I when we try and close our eyes. This is what Allison had to see for herself, but then had to leave because she couldn't continue watching. This is what my son isn't ready for. His tender heart toward our littlest daughter isn't ready to witness firsthand the pain she is in and the helplessness we all feel as we stand by and do nothing.

I thought I would share how Ash was doing tonight. There are no pretty images. No funny stories. Not much of anything that I can even be encouraging about. It just is what it is and it its entirely unfair. We need a miracle. Desperately.


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