A Broken Heart

35,000 children are born with heart defects every year (American Heart Association)
Only 1% of those children have truncus arteriosus (many sources, including the Herma Heart Center where Turnip may be treated)
That means about 350 babies are born in the U.S. with the same condition as Turnip every year. (330 according to the Morbidity and Mortality Weekly Report from jan 6, 2006)
Surgery usually happens at 6-12 weeks (EPA, page 4)
15-50% of children require another surgery within the next five years (i.b.i.d.)
All heart valves are replaced after 12 years(i.b.i.d.)
Newborns with truncus arteriosus stayed in the hospital for an average of 30 days during 2003 (CDC, table 2)
The hospital charges for this stay (not including lab tests and doctor fees) ran to $200,000 (CDC, table 2)
In a small study published in 1996, 6% of infants died before surgery and 10% died during surgery (EPA, page 4)
In a national survey, 20% of newborns with truncus arteriosus died in the hospital in 2003 (CDC, table 1)

Monday, January 30, 2017

Continuing to do well...

O boy is enjoying being back at school. Today is the first day that he went for the full day. Energy seemed fine, and he seemed engaged. A friend of his gave him a big hug at lunch and said she'd missed him so much. He got a silly grin on his face and turned bright red. I was amused!

Last Friday we took him in for an INR check - see how the blood thinners are working. We've been doing that at a local clinic, that isn't part of our insurance, that does it by finger stick instead of a full blood draw - don't need to torture him more than necessary! The result came back at 3.0, which is on the high end of the desired range. After some disagreement, the docs decided it was fine. We decided to feed him some kale (which we would've done anyway, but we did note the Vit K in kale limits the effectiveness of the blood thinners).

Next appt is Friday, we'll see what the doc says. We're supposed to decide the next phase of activity restrictions at the appointment, as the surgery recovery limitations will be going away, and we'll need to more thoroughly consider limitations (or lack thereof) due to blood thinners.

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