Ashley's Story

She will leave fingerprints all over your heart



I make it through our days. Going about the business of running a family, going here and there, caring for Ashley Kate, keeping up with Blake and Allie's schedules, etc. etc. Its at night when I stop long enough to feel the quietness around me, that the weight comes bearing down on my heart full force. I try and sleep, but before I can I start talking to the Father about my daughter. Within moments I'm crying, sobbing so hard I can't breathe. I feel physically sick. I can't stop it. It happens again and again and again. I panic. I plead. I pray. I'm begging for help. I'm so, so scared. I can't explain it. I'm vomiting until I have nothing left inside of me. I can't get up off the floor of the bathroom. I hurt so deeply. I have such a burden. I've never been at a place like this in my life. In her life. I don't understand it. I'm empty. This experience is emptying me.

I'm uneasy. There is a feeling of helplessness. I'm so confused. The only thing I know is that we desperately want Ashely Kate to grow up. One way or another we want our daughter to live, to laugh, to experience, to explore, to grow, to mature. We have no idea how the team will decide to proceed. We have no idea when we want to proceed if they say ok. This is an unbearable situation. Life is continuing on and yet it is spinning out of control at the same time.

I don't even want to share the place that I'm in. I'm so hurt. I'm so sick. I'm so scared.

Ash has been struggling since Tuesday. The incision, the infection, the swelling, the pain. Its all been hard on her. We have seen a handful of grins. Nothing infectious that she is so known for. Just slight, short lived, expressions. Her eyes aren't sparkling. She is trying so hard to feel good, but its not happening. We had hoped for a quick turn around, but now its been 6 days and I'm seeing little improvements but not enough. Her line is leaking. The exist site is leaking a milky, fluid. A chylus of sorts. Its odd. The dressings are filling with the fluid, but the site looks good. I don't understand. I'm not sure how long this new line is going to function with a leak like this. It infuses, flushes, and draws, but a line site should NOT leak fluid underneath the dressing. The dressing should remain dry, sterile, and intact. I've never seen a line do something like this. Today is the first day she has been fever free since the recovery room Tuesday afternoon. I'm encouraged by that. The cultures showed that they were sensitive to the Vanc we are infusing so that was positive. At least we have had her on the right coverage. We were left scrambling this holiday weekend trying to find help for her. The pain was so great that Tylenol wasn't touching it. We left Omaha without a script for pain control and that left us in bad shape on Saturday. Transplant advised us to try and get a hold of one of our local physicians and try to get them to call in something. The ER was just not a good option. Finally, we did get a hold of someone who called in a script for us. As I talked to our transplant coordinator she shared with me that the operative report told a pretty aggressive, violent story of placement. It was not surprising that she was experiencing the amount of discomfort we were describing. She still has a lot of bruising. Her cut down incisions is leaking the same milky fluid that the line is. Its red and sore and angry. I'm trying not to be angry about the situation we are in with this infection, but as I watch her get sicker instead of better its very, very trying.

I'm calling our team Shreveport tomorrow to see if they can see Ash. Tomorrow or Wednesday at the latest. I would just feel better if they could look at all of this and tell me that its going to be ok. Although I know they can't change the situation we are in.

I'm not sure this line with the way it is leaking is going to be enough to get us through another transplant. I just didn't expect it to begin having problems before she ever left recovery.

I can't say that I want to hear from transplant this week. Either decision they make will change the life of our family and our Ashley forever and I'm not ready for those changes to take place. I don't know if anyone can understand those words or not. I'm not sure that I even understand them. I only know that its the way I feel. There really is no good news coming our way. Yes, we will transplant? Very, very dangerous, and scares me beyond description for my daughter. No, we will not? Scares me even more. I assume they will call us Thursday or Friday, but that is just my best guess. They are supposed to meet to discuss her case on Wednesday.

At this moment my beautiful, swollen, sweet girl is sleeping in her bed in her own room. That is a blessing that I am not taking for granted. Not knowing how many more nights she will have here makes this one all the more precious. I'm grateful for these days with her and with the family. As hard as they are on us all we are making memories to cherish for our lifetimes. Your prayers are so appreciated. We can't thank you enough for sticking with us all this time. Your presence in this place is a blessing to my heart and your petitions for my daughter touch my heart so deeply. So thank you.


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