Ashley's Story

She will leave fingerprints all over your heart


After Midnight

Nothing good ever happens after midnight.

When the phone rings at this hour I instantly know its not going to bring good news our way.

Without answering it I already knew.  The ringing told me right away.  Even in my sleep I knew.  I allowed it to ring and ring and ring willing it to stop, hoping I wasn't really hearing it, and prayed over and over and over, "Don't let it be positive, please don't let it be positive."  It stopped ringing and my heart still pounded in my chest.  I kept my eyes closed tight as the ache in my stomach started.  For a few minutes it was quiet, and I hoped it had been the wrong number.

It rang again. I reluctantly answered.  The voice on the other end introduced themselves as doctor so and so and informed me of what I already knew to be true the moment the phone rang the first time as it interrupted the quiet and pierced through the stillness of our night. Ashley's 4th set of blood cultures are positive.  Despite our best efforts at treatment and damaged kidneys and sleepless nights and round the clock IV infusions.  Her central line is still infected.

What now?

All we know to do it continue treating.  We continue treating until we win the battle.  We keep on keeping on in hopes that we will eventually be victorious and she will once again beat the odds.

My heart aches.  My stomach hurts.  My eyes sting.

In 30 minutes I will begin another IV antibiotic and as I sit and wait for it to infuse into her blood stream I will WILL it to be the one...the beginning of the end of this infection.

This infection is unlike any she's had before.  Unlike the others in such a way that that she's not septic from it.  It doesn't appear to be systemic.  She has none of the normal symptoms of a line infection.  Ash is pretty text book when it comes to line infections.  This time though its different.  She just feels...not right.  Not miserable or feverish or trembly or nauseated.  She's just...not right.  She's irritable.  Fussy.  Opinionated.  She smiles a little or laughs at a few things, but she's not happy and giggly and joyful.  We know its the infection that has stolen her normal personality.  You can tell she doesn't feel good, but its very different than what we would expect from a line infection.

On top of her positive blood culture, her lab work proved to be unimproved as well.  The renal function has not turned around yet and her hemoglobin is dropping again.  Its lost two points since being infused last Thursday.  This is concerning to us because we don't know why she's losing blood.  There are no obvious reasons.  I imagine at this rate she will require another transfusion at some time later this week.

If you look at the big picture I suppose you could attribute all that is going on as her body getting tired and beginning to wear out.  I suppose that is whats on the mind of her team of physicians.  We don't hear from transplant at all these days.  I called them and spoke to them at the request of our pediatrician last week about the need for the transfusion. They didn't have much to say.  She's not actively listed at this time and so she's not on their radar screen.  I guess she technically is, but at a very, very far distance.  Her Shreveport team has been in contact with me several times this past week.  All are concerned and all want to watch her closely, but no one has any answers.  In any other "world" she would be sitting in a hospital room, growing up as her days past her by, while everyone waited for things to change for the better or the worse.  I just can't sentence her to a world like that.  Its not in me.  She deserves so much more from me.  She's just a little girl who wants to grow up.  I'm doing my very best to give her the most "normal" childhood I can in the face of such NOT normal circumstance.

At this point in her life not much scares us anymore.  I mean, we are afraid of course, but we are more determined to keep her here where she feels safe and loved.  I'm not sure if that makes sense or if you can understand what I mean by those words.  When the voice on the other end of the line sounds panicked and concerned and unsure of how we will take the news they are delivering I listen and then I thank them and then I do what I can to make what needs to take place in order to take care of her happen.  Here.  In our home.  Until its absolutely necessary for it take place some where else.  When it is necessary I pack her little bag, grab her pillow, and a quilt and off we go with the goal to get back to her home as fast as we can.

I know this may sound insane but we have been so blessed the last couple of years.  We truly have.  We are surrounded by a team of professionals who want what we want for our daughter.  They trust us...we trust them...we all want what is the best possible life for Ashley Kate.  We all agree that that best life is going to be best lived here in her home.  They move mountains for us.  Seriously they do.  I sometimes stand back in awe of what they accomplish for her.  For us.  For our entire family.  We are blessed by some amazing people in her life.

So tonight my beautiful girl with her long brown hair, delicious cheeks, and rosy red lips lies sleeping down the hall from me in her own room, in her own little bed.  She is peaceful and content.  TPN and meds are infusing into her veins.  Other than the IV pole, lines coming out of her chest, and stack of medical supplies, you can't tell she's sick.  The lights from her IV pumps blink in the dark and create just enough light for me to look at her face.  I drink her in.  Burn her image into my heart.  Allow her beauty, her sweet image, to soak into my soul as I reach out to brush my fingers across her face.  She's here.  With us.  Still living.  Still thriving.  Still impacting her world.

We are SO blessed.


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