Thursday, June 20, 2013

Home Minus the Free Part

Livster's parents managed to annoy the staff so much that they finally gave up and let us bounce.  That's not really how it went but we did make our displeasure known to the staff over and over about the tests that continue to provide ZERO results that are indicative to the origin of this nagging fever.  An additional round of blood work and cultures were done yesterday and then we got the green light to leave.  I can tell you that any general viral or bacterial infection has been ruled out.  Everything else is still on the table, definitely drawing parallels to an episode of House.

Olivia was super thrilled to be back at home.  She was all smiles and enjoyed her freedom back in the midst of her playroom and toys.  Around 4am yesterday she did spike another fever of 103 but it wasn't anything that a little tylenol, bowl of cheerios and glass of water couldn't fix.  As we were leaving yesterday there were some murmurs that maybe this was just a tummy bug and would run its course.  I don't know how much faith I put in that assumption, but all right maybe so.  Nonna and Olivia are doing their thing and Nonna has the house as disinfected as she could possibly get it without taking off her own skin.  

Cultures are still negative on any fluid they took from Miss Liv.  Biopsy is now tentatively scheduled for the week of July 8th.  Last night was the first full night of sleep the little lady had in over two weeks.  It made me pretty happy and a little panicked this morning thinking I slept through her calling for a potty run or anything like that.  But before I left the house I went and checked on sleeping beauty and she was all tucked in nice and peacefully with her buddy Nemo tucked right by her.  I don't want to get bold and declare any victories because the fluid intake still seems like it's a struggle, but I'm hoping yesterday was a step in the right direction.

1 comment:

  1. Hi Lisa,
    Im glad you are all back home. I have been following Olivia's story. I came across your blog when I was looking for kids like my Elijah. HLHS/ transplant from Hope and Lurie's childrens hospital.
    Elijah had on and off fevers last year, after so many tests-- we found out that he is neutropenic (sp) low WBC which is one of the side effects of cellcept. The transplant team then played around with the adjustments of his dosage.
    Hoping that everything will be more than okay for the little miss.