Growing Concerns

Its been growing for a few months now.  Each time a set of Ashley's blood work comes across the fax I find myself holding my breath as I scan over a few values.  BUN, Creatnine, Calcium, Bilirubin, and ALT, AST.

Each new set of labs continues in the trend of decline.  The liver and her kidneys.

The numbers aren't good.  They've been worse, but they have definitely been better.  They usually bounce back after a few days, but not this time.  Each set, each week, each value is telling us that there is trouble.  On what level at this point we do not yet know.

This week we received a call from our pediatric surgical team.  Concern.  Wondering how she looked.  Wondering is she had been sick.  Wondering why the drastic change in her liver function.

We are so concerned about the numbers that we've gotten a spread sheet together tracking the decline over the last few months and with those numbers in hand I will do something I NEVER do.  I will place a call to our transplant team.

I can't even remember the last time I spoke with anyone in Nebraska.  Maybe 6 months?  A year?  They haven't seen Ashley Kate in almost two years now.  I don't even know if they will entertain a conversation with me on the phone at this point, but I've got to try.  I need to bounce a few questions, theories, solutions off of them.  I'm hopeful the right person will answer the phone and that they might have some good suggestions for us.

Ashley's Omegaven has been on board for close to two years now.  It was with amazing results that we stood in awe of the "miracle" drug.  Unfortunately, at this time it seems its positive effects have begun to slow.  Her liver is getting sicker each month.  Although I do not doubt it would be much, much worse if she were not being administered the Omegaven.

I don't know what any of this means.  I really don't.  Its just got us concerned.  Nervous.

All in all Ashley Kate looks great!  Her presentation is not something that can be ignored.  She is as happy as ever.  Growing, learning, changing daily.  When treating her we insist on considering her presentation in combination with her lab values.  A patient is so much more than a lab value.  Its just a piece of the puzzle.  An important piece, but still just a piece of the whole.

Her skin is beginning to change color as her bilirubin rises.  The whites of her eyes are too.  Its an all too familiar place for us.  Just adding to our concern that her liver, her transplanted liver, is not healthy.  Not doing its job the way it was designed to do.

All in all it makes my heart sad.  Very, very sad this week.