Friday, November 12, 2010

Pediatric Cardiology Conference

Brian and I were asked a couple of weeks ago to attend a Pediatric Cardiology Conference with some of the Cardiology staff from Hope.  Information was hard to come by to get an idea of what was going to be discussed, but we knew that it would be focusing on Single Ventricle babies between the Norwood and Glenn surgeries.  Yesterday was day 1 of the conference and it was more interesting than I can really articulate.  This group is all about getting hospitals on board to collectively share their data of these babies (most vulnerable time for a single ventricle baby is between the Norwood & Glenn) and together trying to work out ways that will reduce the mortality rate as the primary goal. 

That includes but isn't limited to:
  • Parent care before discharge- up to 72 hours in the hospital where the parents are 100% responsible for care
  • Determining whether it's better to discharge directly from the PSHU/PICU post-Norwood
  • Whether or not it's a good idea to try and get a baby to take a bottle as a primary source of nutrition or use an NG or G tube right away
  • Discharge instructions reviewed with the Heart Clinic Staff
I could go on and on, but let me just tell you, in the one breakout session that I sat through there were 6 different hospitals present and they varied WIDELY on what they did from Day 1 of that baby's life all the way through discharge.  It's no wonder that as parents we're all reading each others blogs thinking "Really - they did that, I wonder why..."  I just loved the opportunity to sit in a room with all of these professionals and listen to them talk freely amongst themselves when sometimes I think they would never be that open with a parent one on one.  I'll let everyone know what today brings...


  1. Oh my gosh! How cool!! (I guess I should have checked your blog before facebook this morning :) ) What a great experience and it must have been nice for them to get a parents feedback also.

  2. Wow, that's so cool! I'm so excited to hear more of what you learned. Especially interested in the discussion of discharging directly from the picu - I'd often wondered the same thing...

  3. I think it would be cool to attend a meeting like that. I also know that each of our little ones are so completely much as they are the same. I would never expect them to do the same thing even at the same hospital. I know it surprises a lot of people that Hope was not intubated until she was 15 days old...she was on room air and her PDA never closed on its own. I know there are certain protocols at each hospital, but I am also glad they watch and make changes based on each situation.

  4. How exciting that you get to be a part of that! I can't wait to see what your next post will bring. Please continue to fill us in :)

    TIna B.
    Mom to Anna Grace (HRHS)

  5. That is so great your a part of that. Let us know what you find out.