Saturday, September 15, 2012

Room 2052, I'm starting to despise You!

I'm sure you can gather by the title of this entry, you'll still be able to find us at Hope Hospital.  Yesterday the only test that was done was the echo.  Results of the echo showed Liv's heart function virtually unchanged from her admission echo on Wednesday.  This was disappointing, not hugely so, but still a little bit of blow to morale.  All the fluid purged from the lasix and the addition of the Dig hasn't done anything to make her heart work even a little bit more efficiently.  Her sats are consistently ranging from 97-99 and she's super pink (even more than before).

The staff took a BNP this morning to see if that number has moved at all.  What's a BNP?  It is a peptide marker that your brain produces and releases into your bloodstream that indicates how the ventricles of your heart are performing.  More importantly, when the number is no bueno, it's a big indication that you're in heart failure.  Liv's admission BNP showed that she was in full heart failure on Wednesday and now the staff is trying to come up with the right medicinal cocktail to reverse the heart failure and obviously improve the heart function overall.  

So what happened to get us here? You saw my blow by blow of symptoms that presented themselves over the course of two and half weeks but I didn't really give any information as to what exactly went wrong to make her heart go crazy.  We only have theories and no real answers and it really doesn't matter at this point, but for the sake of other heart parents reading this I'll give you the suspected causes for all of this:
  • Liv came in contact with a virus where she was asymptomatic but it was still enough to slow the function of her heart to allow it to be overcome by the additional fluid
  • Liv could have been weaned off dieuretics too soon after her Fontan and she had small leakage until it grew to a volume that her heart couldn't manage it any longer and it became a downward spiral
  • For whatever reason, her function may have slowed because of the stress of Fontan and that made the fluid go out of control
  • Tricuspid valve may have become overly leaky - this seems less likely since the echo on August 3rd didn't show much if any leakage to then be completely overrun
The course of action is to continue with the lasix and Dig which are now being delivered orally and hope that today will show BNP # coming down and then discharge.  If that number remains unchanged with the unchanged echo from yesterday, I could see this stay potentially becoming indefinite.  I am of the mindset that if something bad is going to happen, let it happen here, but Liv does want to be in her own surroundings and get out of the place.  Can't say I blame her!


  1. I love that you still use no bueno. I use it to and people at my work that I was crazy, but it has caught on now.

    I hope you start to have more bueno and less no bueno. Thinking about you and praying for you guys.

  2. Boooo for hospital stays! But I agree....if something is going to happen, best it happens there. Big prayers for your feisty little girl! If I were to stick something in the mail for her what is the best address? Could you email it to me at Thanks!!