Nathan at Children's Hospital in New Orleans - pulmonary function tests.

Stressful, stressful, stressful.  That’s how I would describe these past few weeks.  I always dread Nathan’s annual checkup.

I know exactly why I have a hard time settling down.  Nathan’s heart surgery about five years ago was the most stressful event our family had ever faced.  When we got the news that the surgery was a success, we felt so joyful and relieved.  It felt like an enormous burden had been lifted.

As he was recovering at home, we decided we needed to have a pediatric orthopedist take another look at the little deformed vertebra he was born with.  We had been told to be on the lookout for scoliosis.  His back looked nice and straight, so we weren’t particularly worried about it.  But we wanted to play it safe–make absolutely certain that his back was A-okay.

So I set up an appointment about 3 months after that harrowing heart surgery.  I didn’t even bring Bryan for support.  I could handle this by myself because I was dang-near certain there was nothing wrong.  Heaven help me–I was so wrong.

A side view x-ray revealed that he had congenital kyphosis and needed spinal fusion surgery.  It was awful to hear that he was looking at another surgery, and it was going to involve a difficult recovery, a body cast, and a body brace.

Now, I can’t help but feel this sense of dread when I go to these checkups.  I always wonder:  Is someone going to surprise me with some more bad news?

Echocardiogram

We saw three different specialists this week.  First, we got some advice from a pulmonary doctor.  A component of Nathan’s scimitar syndrome is that he has a hypoplastic lung.  The top third of it functions, but the rest of it is practically useless.  We know he has allergies, but we have also suspected he has asthma.

After pulmonary function tests, it was determined that he did, indeed, have asthma.  He will need to use an inhaled steroid each day to improve the inflammation in the alveoli of his lungs.  This will prevent further damage and improve his lung function.  I am very, very glad we met with this doctor.

Next stop:  cardiology.  After an EKG and echocardiogram, the doctor informed us that the baffle created during Nathan’s 2006 heart surgery appeared to be functioning just fine.  Instead of coming every year, he suggested every two years (!) would be reasonable.  Felt so good to hear that.

Finally, we took x-rays to see how that spinal fusion was holding up.  This was the moment of truth.  Oh, oh, oh–I was so nervous.  Last year, we were told the fusion had solidified nicely, but it was starting to curve.  The curve was at 43 degrees.  If it reached 50 degrees, he would need another surgery.

Had the curve worsened?  Yes.  But…  It had only worsened by one degree.  And the doctor elaborated on what we were looking at if a growth spurt causes the curve to hit that dreaded 50 degrees.  Instead of the big deal surgery he had back in ‘07, he would cut through a simple layer of skin directly to the spine and place a few bone grafts.  He would be released the next day–no body cast, no brace.  I could live with that.

All in all, a good day.

Nathan Blakeney, EKG Pro, at Children's Hospital in New Orleans.

Last week, Bryan and I took Nathan to Children’s Hospital in New Orleans for his annual checkup.  His heart surgery to correct Partial Anomalous Pulmonary Venous Return, a problem connected to his Scimitar Syndrome, occurred about three years ago.  The first year after surgery, appointments were a few months apart, but he has done well, so he is seen once a year now.

I asked the nurse who hooked him up for the EKG (electrocardiogram) if his scimitar syndrome required a different placement of the leads.  She told me the leads are, indeed, placed differently on patients with dextrocardia.  To get a proper reading on a heart that is positioned on the wrong side, it appears that the leads are reversed.

Typical placement of EKG leads

I snapped a picture of Nathan while the nurse performed his EKG.  He has had several of these over the years, and although he was not crazy about being wired up as a baby, he now takes it in stride.  He  giggled  when Bryan told him to be glad he doesn’t have a hairy chest.