this heart broken

the story of Zoe Marie

This is the journey through our daughter’s Congenital Heart Defect and eventual heart transplant. When you “decide” to go down the transplant route as it is called there are certain things you find out after you sign on the dotted line.

we are waiting for some lab results.  Wednesday evening (more likely afternoon) Zoe started a high fever.  I wish now I had taken a video of her because I’ve never seen anything like this.  Her fever was 103 and she was running around laughing and acting normal.  The only reason I discovered her fever was because I touched her and felt how warm she was and so checked her temp.  Thursday the fever was still there and she was acting somewhat cranky but still VERY normal.  The pediatrician could find nothing wrong and in the most shocking moment of my life, cardiology told us not to come to the hospital but to go home and see if it blew over.  Around 3:30 Zoe was acting cold and her feet and hands felt cold so I bundled her a bit more (it was a cloudy day) and within a half hour her temp shot up to 104.4!  The pediatrician told us to go to the ER but cardiology said there was nothing to do since she has no symptoms except take labs or start IV antibiotics as a precaution.  So we opted for labs and to come home to wait and see what would happen.  Today she is definately under the weather but no viral symptoms at all.  She’s not really eating but the great thing about feeding tubes is that we can stay home and push fluids here instead of through an IV at the hospital.  We’ll be in close contact with cardiology today and her blood cultures (to check for a bacterial infection) will be done tonight and will give us a plan of action hopefully.  Right now we’re just waiting for another symptom to show up so we know if it’s viral or what.  Her fevers haven’t hit 104 today and when the Ibuprofen gets it under control she’s almost normal again.  Not much fun for the fourth and her b-day party tomorrow has been canceled but we’re happy to be home.

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