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, June 7, 2012

Lab work

Today, small boy had to have blood drawn.  Since he has been on blood pressure medication his entire life, his doctor thought it wise to check small boy's kidney function. 

We are fortunate that this was his blood draw--and Oliver did fantastic!  He sat on my lap, watched the ladies tie off his arm, squeezed the little vial they gave him, and commented "there's blood coming out."  He didn't even twitch when the needle went in.  It think the worst part for him was taking the bandaid off afterwards--and he did that all by himself as well. 

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.

Wednesday, March 14, 2012

First Cardiac MRI

Oliver had his first cardiac MRI on Monday.  Because he is so young, he had to have general anesthesia.  During the MRI, the technicians needed Oliver to hold his breath.  (When you breathe, your heart moves.  The MRI machine is like a big camera.  If you move while the picture is being taken, the picture is blurry).  To get Oliver to hold his breath, the anesthesiologist had to intubate him.  Then, every few seconds, she could stop his breathing for 3-5 seconds while they took a picture of his heart.  Fortunately, the breathing tube came out before Oliver regained consciousness. 

Oliver did well with not eating.  He asked for a snack every hour starting at about noon.  As soon as I told him he had to wait until his MRI was done, he returned to playing.  He was finally sedated at 2:30 pm.

At 4 pm, I got to go back to the recovery room to hold him while he woke up.  He ate all of the animal crackers his Grandma left during her recent visit and drank all of the Gatorade I brought from home.

Then, we went home.  He was a bit calmer than usual all evening--and he smelled horrible. Yesterday, I figured it out: He smells like the anesthetic he was given.   His body has broken the anesthetic down and has been excreting it through his pores and, most noticably, in his urine.  His diapers were abominable for the first day after his MRI was done. By this afternoon, the horrible odor was gone--and his energy levels were back to normal.

We'll learn the results of the scan next Monday at his cardiology appointment.