Ashley's Story

She will leave fingerprints all over your heart


Emotions Run High

Christmas with our kids was so much fun. We enjoyed every single minute of it and NONE of us are ready or willing to remove the decor from our home. We simply love the feel of it. Someday, maybe a day in February?, maybe not, we will pack it all away until next year.

Two days before Christmas we were hit with the disappointing news that Ashley Kate's blood cultures were positive. Again. I thought based on her turn around that we had caught it early and hit it hard. I was not expecting to hear that the lines, both lumens, were still infected. Needless to say my emotions were on edge and I did my best to keep them from running away with the news and causing me to panic. Those positive cultures earned us an extended 17 day course of antibiotics plus the addition of a second agent.

Next we lost blood return in both lumens once again. Trying not to get too emotional about the "difficulties" we are starting to have with her central line. If I allow myself it could get really, really out of control. I'm trying so hard to focus on what we do have and what is working. I have to stay squarely focused on that. The line infuses. That is the most important thing.

We need new cultures but are unable to get them so Dave is planning on spending another evening with Ash in the ER. I hate that its the only way to get TPA(clot buster) for her line, but its the only available avenue here in Longview.

When you mix in 4 hours of sleep a night for the last 10 days or so and the lack of proper supplies sent in our deliveries this week it gets a little emotional around here. I find myself on edge and ready to cry at a moments notice. I'm tired. I'm frustrated. I'm really, really trying to keep it together.

I really believe so much of it has to do with the date. A year ago we were in Nebraska being evaluated for transplant and searching for a line placement above her diaphragm. We have that line in place and have had for a whole year now. I simply can't believe we have been given a whole year. I see her giggly, smiley, little face in our home every single day and I'm so, so, so content and happy to be home with her. I never would have dreamed we would have spent another Christmas together. I believe with everything in me that its because we have decided to slow it all down and just allow her to be a little girl for as long as we possibly can. Had we given the go ahead I don't believe she would be with us. It is such an emotional turmoil we find ourselves in. What joy! What happiness! What peace! She has had another year of all of those things in her life.

Still I shake inside with the acting up and the chronic infection of this line. I don't have the answers. I can't see what lies ahead of us. I can only take it one day at a time and try my best not to make decisions for her out of fear. I have to allow her to live each day.

It has been 6 months since our last conversation with our transplant team. Time goes by so quickly!

Tomorrow we are meeting a nurse who may be a possibility for us. I am emotional about it all. Not sure how I give up some of my mommy duties to some one else or how I learn to have a stranger in our home around the children every day. Its such a journey. Its taken us 6 years to get to the place that we could even consider taking in some help, and I still don't know that we will be able to accept it. We feel so strongly that it is our responsibility to care for Ashley Kate. We are her parents. It is our job.

I'm processing so much right now ... Line infections, positive blood cultures, round the clock IV meds, little sleep, lack of blood return, nursing care, transplant...

then I look at her and...

I realize its all ok because she's here. She's happy. She's so worth this.

Life is blessed. Emotions run high, but I'm so blessed.


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