To those affected by a heart defect:

The Roller Coaster

December 21, 2006 at 2:51 pm by Mom & Dad

Haven had a good night and continued to show promise through lunch today. They have been trying to contine to wean her off of the ECMO cardiac support, but in continuing to do so this afternoon, her blood pressure dropped again and so we are stepping back to re-evaluate things. There are so many variables to troubleshoot when something goes wrong that it can take a long time to fix a problem. Hopefully, we can get things back on track for this evening so Haven can be closer to getting off of the support. She was getting rid of fluid fairly well (relatively) this morning, but again, this afternoon she stopped moving it like she was this morning. We’ll try to keep you posted as things change either way.

Posted in Recovery #1 | 2 Comments »

2 Responses

  1. Sierra Says:

    I’m continuing to lift the Johnson family in my prayers. Just remember to keep looking up! Especially when that is the only clear view!

  2. The Myers Gang Says:

    We Love You Guys and are thinking and keeping you in our prayers constantly. You have no clue what a inspiration you both are to us with your faith through all this.
    Much love to you both and Little Haven.

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This site contains the story of Haven Leigh and serves as a source of hope and encouragement to anyone who has or knows a child born with HLHS, a congenital heart defect, or other terminal illness. Here, we show the rewards of nurturing and supporting a special child while celebrating her memory by sharing her story with others.

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