Ashley's Story

She will leave fingerprints all over your heart



Early this morning we woke Ashley Kate, split one of her gowns up the back(to make it easier on her. Anytime she has to put on a hospital gown she begins to panic so I have learned to just cut hers like hospital gowns and she does much better), and stuck a bow in her unbrushed hair. We grabbed dinosaur and took her down to have her echo cardiogram done. She was miserable. It wasn't so much about the echo. I think it was just that she still feels miserable all over. Her neck and chest are still very sore. You can see the beginning of the cut down incision on the right side of her neck. Its still very swollen and bloody. Her face is really swollen and she can't figure out why her eyelids are so heavy. She kept her fingers in her eyes for most of the day. Anytime they do any type of vascular work in her upper torso she pools fluid in her face. It will take a week or so for it to drain because of the occluded veins. After her echo we took her back to the room and allowed her to sleep for most of the day. She continues to spike fevers off and on and has since coming out of surgery yesterday afternoon. We drew cultures this morning.

My consults today were with financial planning, discussing the new costs of transplant, contracts with insurance, and the like. Not much fun. Really its amazing what can be done to save a life, but its even more amazing the cost of those procedures. The going rate for a transplanted liver/bowel combination 1.3 million dollars. The average cost of a year of care for a kiddo like Ashley Kate? About $50,000. Its not fun to have discussions like we had this morning. My next appointment was just as fun. Pharmacy. We sat and discussed the costs of post transplant recovery medications and immunosuppresants for her lifetime. Again, they have to make us aware of how much it all costs in case things are denied by insurance. Ugh, its a lot of chit chat.

Tomorrow the big guns come out. The major consults with transplant surgeons and then our psych eval. Its going to be a day of us asking a lot of questions and them questions us a whole lot. We will also meet with GI (today it was postponed) and social work.

Its quite a process and a huge network that all works together to pull of these transplants. Everybody has a department and a job to get done and we are thankful for all of them because without even one of those departments her life would not be saved.

This week we have been super blessed with the surgeon and transplant coordinator who is on. I'm pretty sure God worked all of that out for us in advance. They are two of the best and two of the nicest on the team to work with. There are lots of hard discussions coming our way tomorrow and its going be made easier just by the people who are sitting down across the table from us. I really am thankful for them.

I wish Ashley Kate was not struggling so much. Its very, very hard to see her smile gone and her twinkling eyes blank. I hate to see tears rolling down her cheeks as she lies so still and tries to feel better. She is the most well behaved little girl. So precious even when she hurts so much. I love her so very much.

We will fly home tomorrow afternoon after the consults. I look forward to taking her home. Home is where she is happiest. Its where she heals the fastest and feels the safest.

We won't be told the teams decision tomorrow. We will return home and wait for a call that shares with us their final determinations. I really feel in my heart that they will in fact re-transplant if an organ match becomes available. I just don't think they will look at her sweet face and see how much she has thrived the last few months and say no. I don't think they will. As scared as I am about the transplant and the recovery I believe God has a plan for my daughter and I just can't accept that its coming to an end. Not now. Not yet. Not ever is my prayer.


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