Wednesday, May 14, 2014

Eighteen Months!

      I don't know that we would have believed the staff were it not for the fact that we had a reminder on our calendars that Olivia's had her new heart for eighteen months already.  Back in October, after she posted a zero - it gave us a reprieve of one clinic appointment and then a six month break from biopsies.  In between then and now we've lived what feels like a lifetime.  What made it double long was our house being under construction and Olivia getting some "crazy monkey virus" (what I call it for a medical mystery) that started with the stomach flu for everyone back in Disney World during her Make a Wish trip back in February.
   Whatever it was that we all had, she had it worse and it came and it went as it saw fit like a relative that you only see and hear from when they need something.  She would throw up, she would have diarrhea (sorry Liv) and then some days she would be fine.  Our ped tested her for all sorts of things and we couldn't find anything.  We tried adding Prevacid to the rotation thinking maybe her tummy was just so irritated it needed help calming down - only to find out later that Prevacid combined with Hecoria/Tacrolimus is no bueno for the kidneys.  By late April - enough was enough, that eighteen month biopsy was due and Miss Liv was in no shape for it but I asked that the staff still put an order in for the labs just so we could look at her chemistry.  

    Not totally shocking after all her trials and tribulations, the labs came back that Missy was very dehydrated and her kidneys weren't very happy.  All her other electrolytes and counts were really pretty normal though - go figure.  A few day admission to Luries for some IV fluids and a ridiculous amount of tests provided zero answers.  All the tummy troubles slowed down and vomiting completely stopped - but still no real answers.  The only other thought is while that Prevacid/Hecoria combo is not nice to kidneys, her other anti-rejection med Cel-cept can cause diarrhea.  Spontaneously, and regardless how long the patient has been on it without any previous issues.  We lowered doses here and there - cutting Hecoria down to 25% of her previous volume; basically causing Brian and I to think surely by the time she's well enough for a biopsy there is going to be some sort of rejection there now because we're taking this big risk rolling the dice to help the kidney function by weaning down on anti-rejection meds. 

    Yesterday...after another few weeks of very frequent blood draws and tweaking this or that the biopsy finally rolled around. Liv was none too pleased but Daddy getting in the bunny suit to walk her into the cath lab made her feel better.  Her recovery however was the worst we have ever seen.  If she knew swear words and how to fly the middle finger I am sure we would have seen it yesterday.  She yelled and generally disliked anything anyone said for about an hour - her face was swollen the whole day as a result of the first hour coming off the sleepytime meds.  To think - people have worried she doesn't have enough fight in her to deal with her occasional bumps in the road.  (makes me laugh)

   Labs came back - perfect, kidneys are happy happy happy.  The troublesome magnesium that is managed by giving Magnesium Oxide (essentially a laxative) was the highest its been since the transplant. Insert eye roll here - the staff's suggestion for the low numbers originally was to give her about 1,600mg of Mag; after a few days of that and some messy cleanups for us, I talked with the Nurse Practitioner and asked if Magnesium was a water or fat soluble mineral.  She confirmed it's water soluble and when I pointed out that her number will likely get worse if her output is more than her intake - she agreed and we cut Miss Liv back to 800mg giving her a break on Wednesdays and Sundays.  Voila - better number.  The best numbers though were a BNP of 60 and a rejection of ZERO.  Another three months free of clinic and no more biposies until Liv's second annual transplant biopsy in October/November!  We are feeling on top of the world right now despite the fact that the rest of the month holds more house renovations, signing Livster up for school and all sorts of crazy times at both jobs.  



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