Ashley Kate Update

I haven't posted many pictures of Ashley Kate since she became so sick again for several reasons.  One of the main being the color of her skin.  It always shocks me so hard when I see the images of the photos I've captured on the screen.  I guess being with her every day kind of desensitizes me and I don't realize just how yellowed her skin has become until I catch a glimpse of it in an image.  

Anyway, I took a series of pictures of Ash the other day since she was dressed and ready to go to the hospital.   This is just one of a group of shots that made me smile inside despite her color.  Her eyes...they get into my soul with every single picture of her I see.  They always have.  Ashley's eyes tell her story.  Good days...bad days...you can always read my sweet Ashley when you look into her eyes.  I've always loved the way they can sparkle.  

So Ashley's bacterial cultures came back positive for psuedomonas.  Yuck!  Not anything I wanted to hear. We had been treating her for close to a week with no results and once the bug and sensitivities were confirmed it become clear why.  The tricky part we face at this point is in choosing which antibiotics her fragile body can withstand.  Her kidneys and her liver are so, so damaged that we can't always choose the best drug to fight the infection because of the impending damage it does to her overall health.  The choices at this point aren't easy.  Treat to kill the infection, but harm her kidneys or treat to keep the infection at bay in hopes of easing the strain on her kidneys.  Its just a difficult place to find ourselves in.  Ultimately it was decided to use an antibiotic that is not normally high on the list for a pediatric patient, but hopefully it will not hurt her fragile organ systems and push them closer to the edge of failure.  

We have not heard if the fungal infection(yeast) is growing yet and the more days we can stretch out without a phone call that tells us there is growth the better the odds are that in some miraculous way it was cleared.  I'm hopeful but trying not to be naive.

Ash continues to run a low grade fever daily.  Just enough to cause her to feel not so great.  That in combination with continued positive line cultures lets us know she's not out of the woods just yet.  

More line cultures and extensive lab work will be drawn today. 

 Most importantly though is this...Ash is hanging in there...and...for the most part...is happy.

My answer when asked how she is doing remains the same.."she's happy".  As long as I can keep giving that answer then the rest simply isn't necessary:)