Ashley's Story

She will leave fingerprints all over your heart


Crippling Truth

I'm so sorry for the delay in posting today.  I'm so, so tired.  I'm tired of thinking... tired of hearing...tired of trying to learn so many new things so fast...tired of hurting.

I wan't to start by sharing some of the good things that have happened.  There are so many bad things going on in her body, but I'm starting to see some good things take place in her current condition too.

1.The massive swelling of her entire body is going down and she is returning closer to her normal weight.

2. She is able to stretch out her legs and rest completely as opposed to keeping them drawn up so tight trying to minimize the pain in her abdomen.

3.  Her breathing has begun to settle and she is much more peaceful than she has been for the last few days.

4.  She is able to remain sitting up for a period of about 20 minutes and interact with us.  Asking for drinks, picking out a movie, or playing on her I pad.  She hasn't wanted to touch her I pad for over a week.

5.  We saw her smile briefly at something she saw on the TV.  It was short, but so very sweet. I've missed her smile and her laughter more than anything this last two weeks.

6.  She was bossy and grumpy all day long today.  It was good to see her so irritated after watching her be so un interested for days.

7.  A final determination was made today that we will not be taking her into surgery to operate on the bowel!

8.  The team is now trying to figure out how to get us home with her.  Its going to be a little messy, but I think it can be done.  They began working on the possibility today.

These are the happy things that have taken place in her room today.  Small steps, but still steps.

Overall, Ashley's baseline status is very different than what it was two weeks ago. I hope with everything in me that we can get her back to where she was then, but it may not ever happen.  I'm trying to prepare for that.

Ashley has a yeast from her gut, the small portion that is left, that has found its way into her central line.  Yeast is bad.  Its one of the very worst infections a central line patient can get.  The only way to rid her of it completely is to pull out the line.  This team would like to do a mapping of her veinous system to see if they can find anything patent left, but its too dangerous to put Ashley on the vent at this time.  Her body is so weak and she may not have the strength to be taken off of it in addition to the risks of intubation period. They settled on viewing the images and reading the reports done in Omaha back in 2010.  There is simply not anything we can do about this other than treat her with the anti fungal and hope that some day it will clear.  It is my understanding that they are having a hard time believing there is nothing left to work with because they are told all the time that this child or that child is out of central line access and its not quite the case, but unfortunately it is with Ash. Unless a miracle takes place inside of her body and I'm not convinced that when the time comes that it won't.  I'm just holding on to that piece of hope for myself.  She is a living, breathing miracle so I know they still take place.

An echo cardiogram was done late this afternoon to look at the heart valves and determine whether or not yeast has made its way there too.  I have not seen the results and probably will not know anything until tomorrow.  Its very, very important that those valves remain clear of the yeast.

We have talked with hematology and they are doing a work up on Ashley and trying to help us manage her need for hemoglobin.

The kidney team has started her on some new IV medications that I will be giving her twice a week from now on.  Nothing can be done to restore the loss of function in her kidneys and we don't know that we can stop them from declining further but we are going to try in an attempt to keep her from needing dialysis in the future.  Her kidney function, or lack there of has been one of the more surprising pieces of information we've learned of.  Its something we knew would begin to happen at some point, but I guess we didn't realize it had already begun and the severity of it is more than I would have guessed.

Early this morning I spoke with the surgeon in length and his overall assessment of Ashley Kate and her condition is that it would not end well if ever she needed to be opened up again.  It was a hard conversation because I know that our only hope of saving her life would be to open her up for transplant and yet it has a very high probability of taking her from us.  What could save her would ultimately kill her.  How are we to choose?

I want desperately to take Ashley home and care for her there.  Its so hard to be separated from Dave and the kids during this time.  They need to be near her and she needs to be near them too.  I truly believe it is in her best interest to get her back home as soon as we safely can.

We are still being forced to make the hardest decision of our lives.  I can honestly say that Dave and I do not know what to do at this time.  We are at a loss.  Either way I believe we will lose our sweet Ashley and the thought of that is making me physically ill.  There is no way to win for us.  Our precious, tiny, gherkin is going to hurt and suffer and struggle no matter what we choose.  The prediction made by the transplant surgeon two years ago this July is going to come true, "Ashley will not grow up.  She will not survive long enough to be given the opportunity."  I wanted so desperately to prove him wrong, and yet he was right.

 Those truths are crippling.


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