Ashley's Story

She will leave fingerprints all over your heart


Toxic, Damaged, Reversed?

A little over a week ago Dave and I first noticed Ash didn't seem quite right.  Just a feeling, a suspicion that led us to draw cultures.  The cultures confirmed that she had a line infection.  Not an infection that made her really sick, but one that was there and had the potential to make her very, very sick if left untreated.  We began a course of vancomycin to kill the bacteria in her line.

Vanc is a dangerous drug.  All drugs are dangerous.  Its the nature of the beast.  They all have side effects and all run risks of doing damage.  Although we all felt quite comfortable using vanc because Ash has been on it so many times in the past.  It has been the "go to" antibiotic for almost all of her line infections over the last couple of years.  The bacteria growing has always been sensitive to it.

We currently do bi-montly lab work on Ashley Kate.  We draw a CBC, CMP, along with mag and phos.  Ashley's line culture was discovered a few days before her labs were due to be drawn and they showed sensitivity to the vancomycin so a course of treatment was started.  We had no idea that what was being used to treat her infection would become so toxic.

Vanc is a nephrotoxic drug.  Meaning it can cause damage to the kidneys.  This is what has happened.

Last week Ashley's CBC showed her hemoglobin levels has dropped to 6.5.  Very low.  When you combine a normal dosing of the antibiotic (based on her weight) with such a low level of blood in her veins it can be a recipe for disaster.

Ashley's labs are showing that damage has occurred to her kidneys.  The kidneys act as filters and they remove  certain elements from the blood and make waste of them in our urine.  Ashley's blood work, the last 3 sets, have all shown her to have high levels of chloride, urea nitrogen, creatinine, phosphorus, and sodium.  Her renal function is declining.  She is urinating normally, actually very well, but its the blood work that holds the keys to actual renal function.

What does all of this mean?  We aren't sure yet.  All the research shows it can be reversed over a couple of weeks time, but it can also be permanent.  We just have to wait and watch.  Closely!  The long and short of it is if it doesn't reverse itself we may for the first time in her life have to consider dialysis.  This has been a huge hurdle Ashley Kate has always been blessed enough to avoid.  Even in the gravest of times in her recovery  we have been able to avoid it.

We are currently waiting for her lab results to come in for today.

How is she?  How are we doing with this news?

She is doing well.  She doesn't feel as good as she usually does, but she's not acting sick either.  She seems to be a little irritable and frustrated.  Very unlike her norm.  We are doing ok today.  I've had a very nervous, unsettled weekend, but today I feel more calm.  Dave is always calm.  Always positive.

Her blood cultures from Saturday morning came back positive yesterday afternoon.  It took longer for it to grow out than the previous two sets, but its still positive.  Friday afternoon we switched antibiotics and are waiting to see if its going to work.  New cultures were dropped off today.  There is talk of doing an antibiotic lock in her line to allow the drug to dwell in the catheter as opposed to just being pushed through it into the blood stream.  It could work.  The problem with the lock is that the antibiotics weaken the walls of the line and can lead to cracking and splitting of the catheter.  This is what happened while we were on the ship in Alaska.  We will weigh the risk and benefit ratio based on what her lab work tells us today.

This is a very long explanation of what has been happening in our world the last week or so.  This,just like every entry, is just a piece of what life is like around here.  Just a small glimpse, not the whole picture.

Ultimately, I'm going to say this...God gave Ash to us.  I'll never really understand why He chose to trust us to be her parents, but He did.  We are honored, blessed, and completely humbled by it.  Doing the very best job we can to make the very best decisions we can to give her the MOST quality of life possible.  That's our goal...give her quality of life.  It may or may not include another transplant.  Only He knows if organs, timing, and stability will all line up together to make it possible.  There is so much more than most will ever know or understand that goes into making a transplant work.

Your prayers for her, presence in this place, and encouragement  are always appreciated.  Always.


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