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)

Wednesday, April 25, 2012

MRI results

The MRI went as expected:

-I was stressed and grumpy.
-Oliver was calm and happy.
-The nursing staff were patient and organized.
-The procedure was delayed.
-The medical resident was clueless.
-The anesthesiologist was well-informed and personable.

I found out some new things:

-When you are holding your toddler and they get anesthetized, they go completely limp--no muscle tone at all.
-The anesthetic smells sharp and bitter.
-The anesthetic takes a few days to work out of your system.
-While the anesthetic is working its way out of your system, you smell sharp and bitter.
-The smell oozes out of your pores and is excreted in your urine.
-If you are still wearing diapers (like Oliver), the smell becomes overwhelming.

We got our results:

-The MRI showed much LESS narrowing and a much SMALLER pressure gradient across Oliver's pulmonary conduit than the echocardiogram.
-Our Cardiologist switched us back to having checkups every six months.
-Our Cardiologist predicted (with caveats) that Oliver would not need surgery for at least another year.
-Oliver will probably need to start having blood work done as the medication he takes can cause liver damage (there had to be a fly in the ointment somewhere).

We are all very relieved.  
Oliver is blowing the whistle on his train.