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)

Tuesday, July 22, 2014

post recovery draw down

Now that small boy is back to himself, I've entered recovery mode.  I knew there would be a period of re-adjustment after his surgery....I just didn't realize that I, too, would need to readjust. 

I mean, I knew that right after small boy's surgery, we'd coddle him a bit to make sure that he recovered physically.  I also knew that I'd be intensely involved in his every moment.  As a result, I anticipated that we'd have to do some "re-training" after his recovery period was over to shift his behavior back to acceptable norms. 

What I didn't anticipate was how hard it would be for me to turn off my hyper-involvement in the details of his life.  I forgot how difficult it is to shift from crisis mode to normal-living mode.  Needless to say, it is a little bit emotionally bumpy around our house right now!!!!