Ashley's Story

She will leave fingerprints all over your heart


Easter Morning

Easter Morning 2013

Just as the storm blew in fast and furious this morning with a rush of wind and pouring rain, I feel as though this current struggle has done the same.  I hadn't seen or heard a weather report in days, and so as I sat here listening to the labored breathing of my sweet Ash I was taken by surprise when the sky opened up.  I listened to the sounds of the winds howling and the rain pouring outside my door and realized how descriptive this was of our last week.  How surprised I have been by the mighty rush of events and the decline in her little body.  The main difference in the two scenarios being this...I think the storm outside my door has passed, but the storm inside of her body is just winding up.  

This morning our sweet girl asked to moved out of her bedroom and into the family room.  I realized yesterday afternoon that there would be no sweet pics of her smiling face, long brown hair, and shining eyes snapped today.  There would be no silly giggling at the antics of her big brother and sister as they helped to bring a smile across her face as I attempted to capture it so we could hang on to it forever.  I realized there would be no white dress, no hair bow, and no tradition.  So as I finished taking pictures of Blake and Allie this morning I did snap this one of sweet Ashley Kate, and even in the harsh reality of her situation I still find her to be breathtakingly beautiful.  So precious.  So sweet.  So frail.

  We had a long night of getting up and down, taking turns in the spare bed in her room, and caring for Ash.  She was pretty miserable and  unable to sleep for most of the night.  Sometime in the middle of the night she began to cry.  I hadn't heard anything more than moaning or grunting for the entire week.  The sounds of her crying broke my heart.  She is so very sick.

As Dave and I attempt to talk about all that she is going through we are searching for answers to unbearable questions.  It feels so isolating and so confusing as we try to help our girl and pull her out of this current struggle.  How,how, how could this have happened so quickly?  We  no longer believe she is struggling with the line infection.  We had hoped thats what this would all be about, but it is proving to be much, much more.  In brutal moments of honesty we are admitting that we think her liver may be  failing and her spleen is going down along with it.  We don't know any of that for sure, but it is looking more and more as if she may not come out of this the same as she was when she went into it.  Her lab work does not indicate liver failure in the enzyme function tests, but the drastic rise in her bilirubin, the swelling of her abdomen, and the tenderness of it lead us believe this very well may be what is happening.  I say her spleen as well due to the massive amounts of blood she is needing, tenderness, swelling, and discomfort on her left side.  Her breathing has been short and shallow for days, very guarded, and initially we thought perhaps she would end up in respiratory distress and was becoming septic from the line infection.  She was attached to monitors for 24 hours at the hospital with no sign of respiratory struggle.  The only thing not textbook was her temperature which sat at 100 the entire time we were there.  So we are left to believe that her current method of breathing is because of pain and discomfort from the abdominal area.  I desperately hope that we are wrong and that this is not the case, but all our research is leading us believe it may be so.

What is the plan?  I wish I knew.  My hope is to make it through today.  If things change we will call our doctor and then go to the ER, but in all honesty there is nothing they can do up there to help.  We've been.  They don't know how to help her.  I plan on taking her in early tomorrow morning and perhaps seeing if we can do an ultrasound of her abdomen, perhaps look at the spleen.  From there I don't know what will be done or what decisions will be made.

We will also be drawing more lab in the morning.  Hopefully she will have maintained a safe level of hemoglobin and won't require another transfusion.

This is what Easter Sunday looks like at our house this year.  The hope I'm finding is in the fact that because of His resurrection, Ashley Kate will one day have a body that is not broken and she will be just as He is.  One day she will run, she will not hurt, and her tears will no longer fall.

I'll leave you with this image of my teenagers.  Smiles on their faces, but burdens in their hearts.  Its an uneasy, frightening time for them right now as they hold on to the hope that she will be fine because just as Allison said to me, "She always is Mom, she always gets well."  Oh, how I hope your are right!


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