Sunday, November 11, 2012

Making Lemonade

After Olivia's hospital stay in September for heart failure the doctors made some changes to her medicine and said to come back and see them in a month.  When Brian took her back in October, they didn't want to do an echo yet figuring that the meds hadn't had enough time to do their work and improve things.  This past week a little reminder went off on my Outlook appointment prompting me to call up Hope and get her back in for an echo.  As luck would have it there had been some cancellations and they got her in for the first appointment this past Friday.  The results were not as we had hoped, currently Olivia's cardiac status hasn't improved any.  The different medicines have not improved function or overall look of the heart.  It was a bitter pill to swallow or like being given a bunch of lemons shoved in our mouths.

We can try beta-blockers which most adult cardiac patients are on, but it would likely require hospitalization because the reaction in peds patients are so dramatically different than those of adults that they want to keep an eye on her while they're being administered.  Another possibility and really likely to happen sooner rather than later is placement of a pacemaker.  During the Fontans performed at Hope, they pre-wire all the kids just in case a pacer is needed later in life.  Olivia needs help from a pacer now.  What all of this means in essence is that her Fontan was a failure, we don't know why or how this all happened and while I do eventually want a better understanding of it - it does not change the current situation so I'm not devoting a whole lot of thought to it.  Cardiology is shocked how well her exterior looks versus what they're seeing internally.  While it's hard to hear that without intervention her exterior will match the interior, we've got some decisions that need to be made in the near future.

Friday just sucked overall, especially for Liv.  We gave her morning meds with the expectation that she would eat and drink waiting to be seen.  That didn't happen, pairing that with the nerves of her anxiety she got overly dry from persistent vomiting for almost 18 hours and finally stopped around 6:30 Saturday morning.  Poor little girl was just miserable for 36 hours but after sleeping off Saturday like a bad hangover she's got pep in her step and is out running errands with Brian this morning. So never fear, we're going to continue to make lemonades out of the lemons dealt.

1 comment:

  1. Lots of love and prayers for Miss Olivia (and her mommy too!)