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)

Thursday, February 9, 2017

Tippy toppy

On Monday night, small boy snuggled up next to me and asked, "what does it mean if the back of my head hurts and then I feel tippy toppy?"   When I asked him to tell me more he couldn't.

Wednesday night, when I was tucking him in bed, he clarified, "when I said I feel tippy toppy, I mean I feel like I'm floating away. "

"Did that happen to you again? "I asked.

"Yes when I was playing Wii."

"Was your babysitter with you? "

"No, I was at school. "

"You were playing Wii at school? "

"No, [ my babysitter ]  was with me when I was playing Wii. Not when it happened at school. "

"What do you do when it happens?"

"I just sit there. "

"What made you think of it just now? Is it happening now? "

"Yes, but my head didn't hurt."

I noted that his heart rate had flipped from the 80s to the 40s or 50s while we were sitting in bed.

I called the cardiologist at the hospital, who wasn't super concerned. The cardiologist indicated that it was probably either his heart rate readjusting as the amiodarone leaves his system or we might have him on too much blood pressure medication  now that his heart doesn't have to work as hard.

A few minutes later, I went back to his bedroom and his heart was doing a dance. 40 beats a minute, 80 bpm, bigeminy, 40 beats a minute.  And through it all, he was sleeping and breathing peacefully. I wish I wasn't able to hear his heart valve from across the room.

We have an appointment with the cardiologist who specializes in heart rhythms coming up on Valentine's Day. Hopefully we can figure this out then.   Until then, Cardiology does not seem to be concerned.

Their lack of concern is probably related to the fact that otherwise small boy is doing remarkably well:. Running around with friends, playing at recess, and having a great time.