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, May 26, 2015


Called insurance and cardiologist today to ask about getting second opinions.

I wanted to know:

1) Who I should go to for the opinion: a cardiologist or a cardiothoracic surgeon.
2) Where I should go to get a second opinion not only about the course of small boy's treatment but also about the reputations/successes of the two potential surgical programs in our home state.
3) What our insurance would cover.

Small boy's cardiologist called back this evening.  It seems as though the treatment plan and timeline are both in flux.  While the initial recommendation, based on small boy's echo findings, was for surgery this summer, the stress test has complicated matters.  Now small boy's cardiologist and the surgeon with whom he works most closely think it MIGHT be best to revert to the waiting game.   It all really depends on what small boy's pending MRI shows.  If it shows that his heart is enlarged, but the walls of his heart are still a normal thickness and the blood seems to be flowing through adequately, then small boy will start getting echos every three months.  It turns out that kids tend to tolerate having an enlarged heart pretty well.  However, if the walls of his heart appear to be thinning or the blood flow looks troubling, then we'll jump on board the surgery wagon!  

The cardiologist recommended consulting with a cardiologist and suggested the Mayo clinic and Michigan as good places to consult.  

I'm waiting to hear back from the insurance company.  

Friday, May 15, 2015

A day like this

Goodbye, John Poppy

Tuesday, May 12, 2015

MRI date: June 1

...which really puts a cramp on our summer plans if small boy is going to have surgery this summer...

I had hoped he would have his surgery on the 1st or 8th of June, so that he could have six weeks of recovery before the end of July, when the second session of T-ball and soccer and tennis and swim lessons start.

We could pre-emptively schedule a surgery date for the 8th of June.  But I also want to get a second opinion before moving forward and that might not be so realistic.

Alternatively, we could schedule surgery at the end of July...But then we run into two problems: July is when all of the new residents and fellows start at the hospital (I'd rather have more experienced staff on small boy's case if we can) and he would only be four or five weeks post-op by the time school started in September.  I'm not comfortable sending him back to school with blood thinners on board before he is fully recovered.  He is six and likes to run and jump and bash into his friends.  I don't think the school has the resources to ensure that he doesn't do that...at all.

I've scheduled his pre-op appointment for May 20 and plan to call radiology every day after that to see if they have any openings in their schedule so we can get things rolling a bit quicker.

Friday, May 8, 2015

cardiac stress test

Because small boy behaves completely normally and does not act as if he is in heart failure,  his cardiologist and the local cardiothoracic surgeon decided to have him do a stress test before taking fancier pictures of his heart in preparation for surgery.  The purpose of the stress test was to see how hard his heart has to work when he runs around and how fast his heart wears out once he starts running around.

If small boy's heart looked like it was working really hard even when he was doing light activity (walking slowly), or if he showed signs of stress as he was asked to become more and more active (running up a progressively steeper hill), it would mean that his funky valve needs attention now.  In that case, we would skip the MRI (which requires general anesthesia) and just have him do a CT scan (which does not require general anesthesia).  The CT scan would allow the surgeon to take adequate measurements to prepare for the surgery.

If however, small boy's heart looked like it was able to handle strenuous activity, then the physicians would want to do a more detailed MRI (with general anesthesia) to get a better picture of his heart... and determine if maybe we would want to change the timeline for surgery.

If you haven't met small boy, he runs.  He runs to the bus stop in the morning.  He runs to the park in the afternoon.  He runs with his 10-year-old sister and our 10- and 12-year-old neighbors.  He runs on the three-to-five mile family hikes we take every Sunday.

Small boy was very excited the day of the stress test.  He got to go on a field trip with his kindergarten class in the morning and then in the afternoon he got to show his cardiologist how fast he can run.   He talked about it for days before hand.  He planned which clothes and shoes to wear...and then, he ran...on a treadill...with a 10-lead-EKG....for the very first time.

He did a standardized stress test.  Most kids his age last through the first stage or two (Each stage lasts three minutes).  Only 10% of kids his age last more than ten-and-a-half minutes.  Small boy went twelve.

His cardiologist says small boy is giving him gray hair.

We should be getting a call to schedule the MRI soon.

Wednesday, May 6, 2015

nasal cautery

In preparation for blood thinners, we got a peek up small boy's nose and a little way down his throat.  There was only one patch that was cauterized.  The rest looked good.