Charlotte's Journey Home

Just a Regular Kid, Sort Of


1 Comment

Memories, Milestones and a Near Miss (bonus orthopedic update)

Facebook reminded me today that Charlotte spent October 25, 2012 at Lurie Children’s after her cardiac catheterization. While her heart-a-versary (May 16) never evades me, this date had slipped my mind. It was a blip,  a near miss in one way (as she wouldn’t need open heart surgery for another 2 years) and a reminder in another (it had been five years since her last heart intervention). Today, being reminded of Charlotte’s medical complexity on a day when all we had to deal with was typical adolescent anxiety was a gift.

hero garden 1

Charlotte is blessed with a mild version of truncus arteriosus, if a heart defect can be mild. She has no genetic syndrome (like Down Syndrome or DiGeorges, both closely associated with heart defects). She has no neurological, cognitive, or developmental complexities despite the strong correlation between congenital heart defects and ADHD, and between heart defects and learning disabilities.

But, while she has not had any surgical or heart complications (knock wood), she has not gotten off scot free. She is among the estimated 44% of CHD patients who develop scoliosis. So far, so good. her curve is at 5% or so and should not require surgery or a brace. (I did have her read Judy Blume’s Deenie this summer, just in case.)

We learned at her orthopedic appointment last spring, however, that she also has leg length discrepancy. That’s a fancy way of saying that one leg is significantly shorter than the other., the initial assessment indicated that there was as much as 2cm difference between the legs. Dr. King recommends surgical intervention for discrepancies +2cm.  The surgery requires two small incisions near the knee cap through which the doctor manipulates the growth ligaments on the longer leg to stop its growth. The surgery is timed so that the child will grow roughly as much as the discrepancy after surgery, letting the shorter leg catch up. There’s about a month on crutches and discomfort.

In October, Dr. King took special x-rays to measure each bone in the leg and determine just how big a discrepancy we’re facing. Special x-ray = laying a yardstick down next to the leg and then studying and measuring the resulting image. Not nearly as high-tech as I’d expcected!

The initial assessment indicated that there was as much as 2cm difference between her legs. Dr. King recommends surgical intervention for discrepancies +2cm.  The surgery requires two small incisions near the knee cap through which the doctor manipulates the growth ligaments on the longer leg to stop its growth. The surgery is timed so that the child will grow roughly as much as the discrepancy after surgery, letting the shorter leg catch up. There’s about a month on crutches and discomfort. They figure out the timing based on a hand x-ray that allows the doctors to determine the child’s bone age.

Charlotte and I had the same reaction to the news. We felt like we’d been punched in the stomach and resisted the urge to cry. As soon as we got home, I locked myself in the bathroom and wept like a baby. I couldn’t imagine my poor baby being surgically prevented from growing. And, based on her initial reaction, I knew that if she needed surgery we would be facing a different, and deeper, kind of anxiety than with her last heart surgery. The difference betwen 9 and 11 years old is significant in that regard.

About a week later, Dr. King called with the official results of Charlotte’s bone age study and leg measurement. The bottom line: the in-depth measurement shows only a 1cm discrepancy. So, for now, NO SURGERY FOR CHARLOTTE. Just six month check-ins until she finishes her growth spurt.

We  were all so relieved. A reminder of Charlotte’s forever status as a CHD patient, and a near miss in terms of another, new kind of surgery. And a chance to see just how like a giraffe she will naturally become. She’s topped 5’3″ already and towers over her friends, a cousin, and lots of adults.

With our gratitude to whatever powers continue to let Charlotte lead a regular life, our hearts go out tonight to Rosie Rose, a 12 year old who has been living with brain cancer since she was three. Today she had her tenth brain surgery (23rd surgery over all). She, her mom, and sister are the true warriors–living on their faith in G-d and using their spare time to raise money for Lurie Children’s and pediatric cancer. Please keep Rosie in your prayers.


Leave a comment

Short (or Tall) and Sweet, An Orthopedic Update

If heart surgery didn’t stop Charlotte from running Move for the Kids 5K for Lurie Children’s last year, scoliosis sure won’t slow her down this year. And, since she’ll miss the Girls on the Run 5K for a school trip, she’s bound and determined to run the whole thing.

Last month Charlotte and I saw Dr. King for her annual scoliosis check up. We visited him at Lurie Children’s satellite office on Clark and Deming.

She measured a full 5’2″ tall. We weren’t surprised by that because she had been taller than Dr. Young at her cardiology check up the previous week.

DSCN2400.JPG

Charlotte in paradise. Maui, 2016

Charlotte’s x-ray showed no appreciable increase in her curvature. It remains about 5-7% curved, which Dr. King says many of us have without ever knowing it. He believes that if her curve stays where it is no intervention will be necessary. No surgery. No brace. I couldn’t have been more grateful to hear that as I had visions of Judy Blume’s Deenie swirling in my head. Yep, I know braces have changed a lot, but I still had those visions.

 

But, given that girls hit their growth spurts between 11 and 14 (don’t tell Charlotte that, she thinks that two inches a year is a “spurt”), he asked to see her again in 6 months.

Research connecting scoliosis, CHD, and thorocotomy/sternotomy is inconclusive. But I can’t help but think they are connected, based on anecdote. When Charlotte was diagnosed, her friend and fellow Truncus Arteriosus patient Jessica (who is a grown up) wrote to me that she had scoliosis also and suspected it was related to the surgeries she’d had as a child. Hers was diagnosed until intervention was too late and she suffers some pain.

Please support Charlotte as she Moves for the Kids to give back to Lurie Children’s and doctors like Eric King. Just click on one of the links above or on the photos below and make a donation, or register to walk/run with us.

 

 


Leave a comment

Not What You Think It’s About

You know how your mom always told you that if you “it’s all fun until someone gets hurt”?  Well, someone got hurt. Neither Charlotte nor Phil can remember the exact turn of events, but after they horsed around in an elevator for a few minutes last Saturday, Charlotte’s finger hurt. A lot. And she couldn’t bend it.

After lunch, the finger was swollen and hurt a lot more. I called Lurie Children’s Convenient Care and made an appointment. (Seriously, if it’s not a real emergency, why go to the ER if you can get an appointment at a place with an x-ray machine?!) By the time we got there, little purple bruises had begun to blossom on the second and third knuckles of the offended finger.

Two exhausting hours (and a chapter of The Two Towers) later, the diagnosis: a fractured pinky finger. A hairline fracture, but bad enough to require a splint and a return follow-up with the orthopedist.

IMG_0001_2

The Child Who Doesn’t Nap

IMG_0653

It’s not so bad when the splint gets you a trip to Mrs. Murphy’s for fish and chips and ice cream.

 

 

Today’s follow up wasn’t quite as long–though Charlotte did miss two tests that we’ll have to do at home. The orthopedist said, “Well, her x-ray is not impressive. Just a minor hairline fracture. But let’s splint it again and we’ll see you in three weeks.”

 

The upside to a broken finger? Heart surgery seemed far less dramatic this week. Charlotte was inconvenienced by the splint. It is uncomfortable, hot and sweaty and kept her from participating in acrosport at gym. Funny how the immediate minor problem completely displaced all discussion of the upcoming major surgery. The countdown basically stopped.  Gotta love being nine!

IMG_0660

Thank you to the newest members of Team Charlotte: Dr. Higgins, pediatrician on call last Saturday, and Dr. Janecki, orthopedist today. Jose the splint guy and Nurse Nancy (even though her name tag says “Ann.”)

 

 


Leave a comment

Orthopedic Follow Up

When we last left Charlotte on her medical odyssey, she had had “scoliosis” added to her already extensive and impressive list of diagnoses. Fortunately it is not life-threatening, nor even (at this point) life-altering.

We met with Dr. King, the orthopedist, in August and, based on his findings, he suggested a six-month check up so that he could ascertain if the curve in her lower spine is increasing quickly or not.

photo

A refresher–the original diagnosis noted a 15% curvature, just enough above average (10%–we all have some curvature in our spines) to elicit a diagnosis.

This week’s follow up shows the curvature holding steady at 15%. So we are officially on a yearly rotation for follow up unless we notice something or the doctor does. At this point, he doesn’t expect to see much change until she hits her growth spurt in about 3 years.

On the growth spurt front: Dr. King mentioned the “growth spurt” just after I learned that Charlotte has grown 1.3 inches since her August visit. At 4 ft. 8 ins. she is officially less than one foot shorter than I am, and perhaps more interesting, less than 4 inches shorter than her cousin Jamie (Jamie is none to pleased about this, by the way).