Ashley's Story

She will leave fingerprints all over your heart

1/11/2011 least for now

Because you asked:)

Honestly, I have intentionally and willfully kept my mind away from all transplant related thoughts, images, memories, questions, fears, etc for several days. Living in a land of chosen ignorance has been lovely. Just lovely. I have not allowed myself to say or even think the words since last week.

I have not talked to transplant. I have not asked for a final decision. Dave and I have not discussed our decisions. I have lived life as if we had not a worry in the world and it has been so refreshing. I have played, laughed, enjoyed, and taken care of Ashley Kate as if life just like this could go on forever and perhaps may have even tried to talk myself into that as if it were a fact. I know its not, but that is the reason for my lack of posts or updates.

You see, when I turn on this screen and allow my fingers to run rampid across the keys then my thoughts and my fears tend to do the same thing. I have a hard time keeping inside the things that are flowing through my mind and hence the honest and sometimes unbearable words that find themselves on this journal.

If I avoid opening my soul then I get to avoid opening the pain of the place in which I am residing. Instead I am going about day to day life with the ignorance taking center stage rather than the reality.

So...what is going on? Many people have noticed Ashley Kate's change in skin color lately. She is no longer looking yellow and sickly. She has responded very, very well to the Omegaven and although her bilirubin levels are not yet normal they are getting closer every week. Last week they were down to 2.4 and that is the lowest they have been since removal of her bowel and dependence on TPN. She never "tanked" in her numbers like was expected for the first 8-10 weeks or so. She has just done....remarkable. Her enzyme function is normal as well. The ultrasound during her eval did show evidence of some reverse portal flow damage that the surgeons do not believe will resolve and so when discussing transplant it was decided that they would once again transplant a liver and pancreas along with the small intestine. Ashley is full of energy, happy, playful, and living with very little evidence of liver disease. Such a change from the fragile child we brought back home in August. Still....we all know she must have a transplant. There is no avoidance. The lack of central line access has sealed her fate and therefor at some point we will have to allow them to re-transplant her organs or she will die. It could be with the next infection and that could occur at any moment. The loss of her central line would be a death sentence for her. This is the factor that forces us to decide at which time in the near future we will ask for her to be listed. If not for that fact then we would go for a year or maybe even two, as long as she continued to be stable, without even discussing re transplantation.

She has two more days of IV antibiotic treatment for the staph infection and then we will draw cultures to see if her system is clear from it or not.

Her line site seems to be healing. We have gone 4 days since having to change her dressing and that has been the record since placement in Omaha. I think the chylus injury is healing. Her incisions have sealed and are no longer leaking. They look pretty good.

Ashley is silly and happy. Very stable at this time and so it seems like it would be an easy decision to make concerning transplant, but it is not. Take her now while she is stable...but risk her death at any moment during, immediately after, or possibly weeks later? Keep her here...allow her to live, enjoy some more time, grow up a little, experience life...on her last available line site? There is no easy decision. We do not know what we will decide. We are trying to weigh both sides of the equation and trying just as the surgeons advised to not get emotional while making it. So far we haven't figured out how to not get emotional about it. In all honesty it has been days since Dave and I have sat and talked about what we should do. I think we are avoiding having this conversation because it is just too hard right now. There is no way of escape from what is to come and we do have to make a decision soon. Hopefully it will be the right one. If its not I don't think either of us will ever be able to live with it.

For today though we have two more days of treatment and then about 72 hours after that while we wait for potential growth on her cultures to remain in this land of ignorance and just keep acting like the weight of the world does not indeed rest on our shoulders.


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