Charlotte's Journey Home

Just a Regular Kid, Sort Of

Measuring Up, or Heart by the Numbers

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We measure Charlotte in many of the same units that most parents measure their kids–inches and pounds (or centimeters and kilograms). We measure her life, as most parents do, in units of years, whether her own years or school years.

As of August we now also measure her in terms of percent of spinal curvature as we track her juvenile idiopathic scoliosis.

Mostly, though, we hold our breath for the one to two times a year when we measure her by the opening of her pulmonary conduit and the velocity of her blood flow. These are the measurements that remind us that Charlotte will be a heart patient for the rest of her life. These are the measures for which we hold our breath and after which, most of the time, we give a deep sigh of relief and then have lengthy, nervous conversation with Charlotte’s cardiologist. How many parents worry about their child’s blood flow velocity or medial measurements? More than I’d like to think about, I’m sure. But it still gives me pause each time we visit the incomparable Dr. Luciana Young. These are the measures that have led me to measure my life by our contributions to Lurie Children’s Hospital (more about that later!).

That time of year came again last week.

Lurie Children's Hospital Photo Op Spot-(9/26/2013)

Lurie Children’s Hospital Photo Op Spot(9/26/2013)

The good news is that Charlotte’s measurements have not changed since her February checkup. The sobering news is that her measurements, specifically the diameter of her conduit, are good, but not as good as Dr. Young would like to see them.  The cardiac catheterization last October did a great job, quadrupling the size of the opening. However, she continues to have stenosis in the conduit.  We’re hopeful that her numbers will remain stable for a while. (I didn’t write down the actual numbers. If you’re dying of curiosity, I’m sure we can get them.)

If not, we’ll talk to Dr. Gossett and pray that another catheterization or even a stent procedure can buy us time until the next repair.  Truly, eight years old is proving to be an emotionally delicate age and I worry that the need for further medical intervention could be quite traumatic for Charlotte. So, these will be the numbers for which I’ll hold my breath in February and pray that we’ll have bought another year–another year of growth and another year of maturity and understanding.

For now, we watch and wait. Next check up in 6 months.

Meanwhile, for the truly astounding numbers: Charlotte has grown 2 inches since July! She measures in at an astounding 4’7”. She’s no longer the very tallest in her class, but her height continues to stun me.

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Author: Culture Bean

I am a mother, a pre-published children's author, and a published academic. I am also a "mommy blogger," though I hate the term. My passions are reading and writing. As a professor, I strive to help my students think critically about the media and culture with which they engage. I've started this blog because it's time I put my money where my mouth is!

One thought on “Measuring Up, or Heart by the Numbers

  1. Pingback: Six Month Checkup or Remember? Charlotte is a Heart Patient | Charlotte's Journey Home

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