Ashley's Story

She will leave fingerprints all over your heart



Ashley Kate is currently on her 3rd IV bolus of potassium.

Each infusion takes 3 hours.

She was admitted last night for a blood transfusion that took 3 hours.

We would really like to see her level rise to above 3.

(Yesterday it dropped as low as 1.4.  Scary, dangerously low level of potassium to have in the blood stream, true Ashley would have never known it unless you were reading her lab sheet.)

I just hung up the phone for the 3rd time with Dave as he told me another dose had been started and the hope for getting home had now been pushed to 10am.

First we expected, 2:30 a.m., then 6 a.m., now 10 a.m.  I'm hoping this whole 3 thing keeps going and that the 10 a.m. goal is met.  We are scheduled to leave town today at noon.

3 things could be causing this sudden decline in her potassium levels...

1.  Side effect from the antibiotic that was chosen to treat the psuedomonas.  Remember we were trying to spare her kidneys more damage and went with a drug not commonly used in pediatric patients?  If this is the cause its easy enough to fix in theory...we find a different option for treatment...sometimes easier said than done.

2.  Kidney disease.  Her kidney decline and its poor function is something we are relatively new to.  We know minimal amounts about them, like how to read lab values, and basically how they work inside the body, how different drugs are toxic to them, etc.  but we are learning.  I sat across from her doctors two weeks ago and asked them if when reading her kidney numbers they saw "red flags" that said "keep an eye on us, we are struggling, we have disease" or did they see "red alarms" screaming "kidney failure, dialysis, imminent danger".  There answer was this..."we see red flags at this time.  We know her kidneys are diseased, but we also know they are diseased from use of antibiotic and other medications used to treat her.  Its a different disease process than being born with diseased kidneys.  We don't see imminent failure/dialysis at this time.  We see a set of sick kidneys and we know why they are the way they are."   How does that make me feel?  I'm not sure how to answer that.  I know her kidneys are now functioning at close to 50%.  That in and of itself is scary.  I also know that this low potassium scare/issue is a result of something her kidneys are going through.  Whether that be caused by the antibiotic or by disease process, either way the kidneys are hurting at this time.

3.  A fluke.  Just one of those odd things that arise from time to time inside a transplant recipient's body.  Ash's body is jacked up from the use of another persons organs to keep her alive and the medications it has taken to keep those organs functioning.  This whole episode could just be an unexplained "fluke" in her journey and will be worked out on its own with a little support from IV potassium infusions.

I say all of that to say this...Ash is sick...but...Ash doesn't know she's sick.  The biggest danger in levels of her potassium registering this low is her heart.  For some reason the kidneys and what they do and how they function inside of our bodies have a direct affect on our hearts.  Her kidneys spilled out, used up, or whatever her potassium and her heart is in danger because of it.  So...we give her potassium and monitor her blood pressure and heart rate.  Its the best we can do.

My hope which may seem silly to some is not to disappoint her today.  She is planning on taking a little trip to Dallas this weekend which means she gets to go in the car for an extended drive.  She's happy about that and I don't want to take that away from her.  So I'm hopeful I don't have too.  In the grand scheme of her life being sick is what she has to do.  She doesn't get to choose not to be...but...when its possible I try and make that as normal as I possibly can and just keep on keeping on with her.  She likes it like that.

Third times a charm...I hope:)


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