Charlotte's Journey Home

Just a Regular Kid, Sort Of


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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.

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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.

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Happy Birthday, Charlotte!

On May 9, 2005 darling Charlotte came into the world four weeks early. On May 9, 2006, I started my blog tradition of a letter to Charlotte on her birthday. In a perfect world, the letter would have been written and posted last night. Our world, however, is not perfect, so she’ll have to read it tomorrow!

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My dearest Charlotte,

My mind cannot process the fact that you are ten years old today. What a magical and frustrating age (for you and for us, I’m sure)! You still have one foot firmly grounded in childhood–as easily awed by the wonders of the world as you are amused by my (sometimes lame) jokes, as eager to please as you are quick to anger and frustrate, and as creative, strong, and kind as you ever have been. Your other foot is on the edge of your biggest journey, into adulthood. I can see that it frightens you a bit, the vast future in which you need to figure out who you’ll be and how you’ll get there.

While the road ahead may be frightening, it will hold as many wonders and as much love as you let it. And there will be potholes (the first of which we hit, literally, on the way home tonight).  You have already traveled further than many ten year olds. You have proven again and again that you are a survivor with a healthy sense of humor. Don’t believe me? Just take a look…

First Birthday  On May 9, 2005, we gave you a cupcake, Karley took a photo, and we went out to dinner (without you) to celebrate having survived a year that included premature birth, heart surgery, 49 days in the hospital, g-tube insertion, cardiac catheterization, and a cranio helmet, not to mention countless vomits, physical therapy, feeding therapy, meds, and more. You were thoroughly unimpressed by the cupcake as you were still largely tube-fed and tiny. A few years after this picture was taken, I finally realized just how scrawny your legs were and how huge your eyes looked in your head. You were (and are) our darling, energetic, bright star; we never saw what others saw–that your legs looked like skin-covered toothpicks. Only looking at this photo now can I understand the concern with which people always asked about your health.

Today’s photo says it all, and yet says nothing. You are still our shining star. And now you know it and ham it up as often as you can. We began your special day with a trip to tour Frank Lloyd Wright’s Robie House because you were inspired by Blue Balliet‘s The Wright Three. Then, instead of your regular cod with chipotle mayo birthday dinner, we took you to our favorite upscale casual restaurant, Summer House Santa Monica. DSCN1414

What this picture doesn’t show is how brave and strong you are or how similar and yet how different this past year has been from that first year. Again, you’ve had a cardiac MRI and open heart surgery. (That broken pinky is nearly forgotten). This time, you kind of diagnosed yourself and let us know something was wrong. There was no drama and you had a textbook recovery. You courageously shared your surgery with your classmates, and in turn they showed you unparalleled compassion. That’s the big stuff. On the smaller side, you went to sleep away camp for the first time, mastered long division, and proved that you can learn a hard piano piece if you put your mind to it. You’ve taken your chess game to the next level, played the piano for charity (the week of your surgery), and given your Belgian grandmother one of her best ever Christmases. My heart skipped a beat when you put change in the tzedakah box this morning, saying that you didn’t feel right keeping Jenny’s entire $10 gift for yourself.

Best of all, you greet nearly every day with a smile or a full on giggle. Ever since you were a baby you have seemed to sense how precious a gift each day is.

So, my darling girl, as you step onto this road ahead, know that you will grow back into the comfort you have with your scars. They do not define you–they decorate you much as the medals on the epaulets of a soldier’s uniform do. You have won the battle, with the help of the inestimable Team Charlotte.

This year Team Charlotte is too vast to mention, for fear that I’ll leave out some wonderful nurse or tech at Lurie Children’s Regenstein Cardiac Care Unit. Thank you all, from the bottom of our hearts.

Charlotte, may you ever grow from strength to strength. And as I tell you each day on your way to school, be calm, curious and creative and remember that I love you, all day, every day.

MFTK 2015

On May 17, Charlotte will be RUNNING a 5K, Move for the Kids, to raise money for Ann & Robert H. Lurie Children’s Hospital. Charlotte chose this race, which she’ll run with her dad and her cardiologist, to mark her full recovery. Please click on the icon to support Team Charlotte. And register to walk or run with us!


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Charlotte Speaks Up — A Heart Update

We’ve always told Charlotte that she will eventually be able to read her body and tell us when it has time to go to the doctor. We just never thought it would happen before she hit adolescence. But, Charlotte has been a self-aware and observant child from the beginning, so I guess we should have been prepared.

C on stage GCFAS

A week or so ago, Charlotte told me that she had had chest pains after running hard during a game of tag. I asked if it felt like her usual chest pains* (typically caused by reflux). She said no. She mentioned it again the next day and I asked if she was concerned. She said, “Not concerned. Worried.”In the past month, she  has reported being tired after thirty minutes of horseback riding (at her level it is seriously not that strenuous a sport) and slept for 13 hours the first night of her October vacation.  I have no doubt something is going on. So, I shot an email to her cardiologist and we’ll be going in for her check up next week–5 months earlier than anticipated. Needless to say, Philippe and I are now worried, too.

Charlotte’s last intervention was a cardiac catheterization and balloon procedure in October 2012. Drs. Gossett and Young  both told us that while the procedure was incredibly successful, it might buy us a few years (or 2 to 3 years, depending on who remembers the conversation) until we’d need to talk about surgery, or some other intervention. We’re just past 2 years on that intervention.

To put this in perspective–which I am desperately trying to do–Charlotte’s last repair was in March 2007. She was 20 months old. She bounced back after surgery beautifully and grew 4 inches almost overnight. It was evident how necessary the surgery was when we saw her renewed energy and sudden growth, not to mention her quick weaning from the g-tube.  The anesthesiologist at the time told us he’d never seen a conduit that large put in a small child and that he was sure the repair could last for a long, long time. Even close to 10 years. Well, we’re close to 8 years on that repair.

We don’t know what we’re in for, other than the roller coaster ride of remembering that our jewel is a heart patient and always will be. It’s not all she is, not by a long shot. But her heart, both literally and metaphorically, defines our family in so many ways. Sometimes, like this week, it defines our focus. Sometimes, like in the photo of Charlotte on stage at the Gold Coast Fashion Award Show in September, it defines our philanthropic bent.  That’s the literal heart, of course. As I work to keep things in perspective, I’m reminded that her metaphorical heart truly defines us by reminding us that there is wonder in the world, compassion in great droves when you least expect it, and laughter to help heal all things.

Please keep Charlotte in your thoughts this week.


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Six Month Checkup or Remember? Charlotte is a Heart Patient

Back in October I reported that Charlotte’s heart was doing well, but not as well as we would all like.  Dr. Young asked us to come back in six months to see if the numbers, specifically the diameter of her conduit and the gradient blood flow into the right pulmonary artery, were holding steady.  As the appointed date of the check up drew near, I once again held my breath. Charlotte has been growing like a weed and she’s been more tired than usual, The combination didn’t, in my mind, bode well.

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November 2013: Phil’s goofy beard courtesy of “Moovember”

Last week, I roused Charlotte earlier than usual and we headed to Lurie Children’s Hospital for our 7:30 a.m. appointment. Charlotte had an EKG and an echocardiogram, as usual.  The pressure across her conduit measured at a 52 degree gradient. With blood pressure at 100, that means that her gradient is about half of her systemic blood pressure.  It is roughly the same as our September visit and a bit higher than Dr. Young would like. Since her EKG and echo looked about the same; neither the valve nor the conduit seemed to be leaking; and there was nothing in her physical exam to cause alarm, Dr. Young said we could come back in a year for our next check up.  When that gradient hits 60 or above, we’ll have to discuss another catheterization and, possibly, a “conduit revision.”

Good thing Charlotte didn’t quite pick up that “conduit revision” means surgery; she was too busy telling us how horrible her leg felt after the last catheter procedure and that the only good thing about that night in the hospital has been that she got to eat breakfast for dinner (score 1 for the 24 hour “room service” at the new hospital!).

My heart thumped in my throat when I heard “conduit revision.” When she was a baby, she wasn’t scared. It's Almost Moving Day! Prepare to be AMAZED.She just toddled in to the hospital, charmed everyone around her, woke up groggy but smiling, and kind of forgot the whole thing rather quickly. Now, my lovely almost 9-year-old will get it and be scared.  And I fear the day she hears Dr. Young say that it’s time to consult with Dr. Gossett and Dr. Backer.

This is Charlotte’s reality–she will need more heart surgery, probably sooner rather than later.  In January 2005, Dr. Cuneo of RUSH Northshore told us that she might need as many as 3 valve and conduit replacements. She estimated–based on growth spurts–18 months, 7 years, and adolescence.  We eked out to 20 months and 7 years old is long since passed. So, I hold my breath and probably will continue to do so until it’s time to forge ahead, and be strong for Charlotte’s sake.

Now, for the important numbers: Since her last check up (remember, October 2013) Charlotte has grown TWO INCHES. She is now 4’9″. (Or was last week. I think she sprouted again recently.)

And now a word for our sponsor: Join Charlotte, Philippe, and I as we Move for the Kids on May 18. Team Charlotte will join the Children’s Service Board and work to make the CSB the leading fundraising affiliated organization for the third year in a row. I’d love for Team Charlotte to lead the charge–so if you even if can’t walk, please click on the image below and make a donation in honor of Charlotte, or your own favorite heart patient :-). We’ve built a new hospital and now we need to keep the philanthropic funds coming in to assure that Lurie Children’s Hospital continues to be one of the best in the country. Thanks!


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Congenital Heart Defect Awareness Week

Congenital heart defects are the leading cause of infant mortality in the United States. CHD affects 1% of all newborns in the U.S. and are responsible for more deaths in the first year of life than any other birth defect.

Truncus arteriosus is rare among these–according to CDC statistics, 0.72 live births in 10,000 have TA. That’s around 300 children each year. Consider that Prentice Women’s Hospital, the hospital where Charlotte was born, delivers more than 10,000 children each year. and you can begin to get a sense of how few children are born with this defect.*

A recent-ish study demonstrated that truncus arteriosus is one of the most expensive hospitalizations of any defect. An average neonatal stay is $192,781. Average hospital stay is around 21 days.* (Recall that Charlotte’s first stay was 49 days; she was above average even then!) Charlotte’s most recent hospital stay, an angioplasty that required only one overnight stay, came in at more than $66,000, so I’m guessing that her neonate stay was much higher than average.

On the left, a normal heart. On the right, a TA heart. note that there is no definition between pulmonary and aortic trunks (what is purple on the right is blue or red on the left, indicating oxygenated/de-oxygenated blood mixing.)

90% of newborns survive their first repair. The degree of complications after that surgery is hard to track, I think. It depends on how much damage the heart suffered prior to repair (for Charlotte, minimal, thank goodness), what other underlying medical issues are there, and (I think) each child’s individual constitution.

Those are the CDC stats, the numbers that parents seek out when they first hear those life-changing word, “The ultrasound shows…” After that other numbers take over, ventricular performance, pulse ox, weight, medicine dosages, food intake, months to next surgery, etc.

Parents seek out other parents, and in 2005 that was hard to do.  While I try to avoid medical advice and information on the internet, I have relied on it for reflux support and I am proud that this blog has given it to other parents facing Truncus Arterisus and other CHDs.

To celebrate and raise awareness, I’ll spend the rest of the week writing about CHD, community and support. I’ll talk about two of my favorite CHD parents–Tommy Riles and Francie Paul–who have taken inspiration from their children’s medical difficulties to raise awareness and money for children born with congenital heart defects. I’ll talk about how the new Ann and Robert H. Lurie Children’s Hospital of Chicago makes a difference every day for parents and kids facing CHD, both the facility and the US News & World Report-rated Cardiology team. And I’ll end with Charlotte’s post-catheterization check-up, serendipitously scheduled for Valentine’s day.

If you are a parent of a CHD child, or have a CHD yourself, I invite you to tell your story in a comment, and/or add a link to your own blog.

mended heart

*CDC.gov, National Institutes of Health


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End of a Long Day

Hmmm…maybe I can be a ghost for Halloween?

Charlotte is drifting off to sleep as I type this, two hours past her bedtime, one hour past her chest xray, and about three hours after a (very) late breakfast.

My view right now: Our brave little girl, sound asleep, unperturbed by the camera flash, the chimes of the monitor, or the sounds in the hallway.

I think if she were awake, she would tell you that the worst part of the day was not being able to eat for 25 hours.  Second worst, being forced to lie on her back for six hours post-procedure, even if she got watch a “Cute-a-thon” on Animal Planet.

Here goes: After grumbling last night about how she wouldn’t be able to survive without eating breakfast, Charlotte made it to the hospital in rare form.

Eventually the serious stuff started. Vitals were taken. Charlotte weighs 26.6 kg. Then she had her blood taken. I had conveniently forgotten to tell her that would happen (after the histrionics over no solid food after midnight, I wasn’t taking any chances, folks!).  She fussed for a moment, then considered and said, “Will they take more than at the doctor’s office?” It took me a minute to remember that at her 6 year old check up she’d had quite a blood draw.  “No,” I said, “a lot less.” Boy, am I glad I was right.

After Nurse Jean listens to Charlotte’s heart, she decides to find out for herself what the big deal is. As we say in our house, “Thump, swoosh.”

Next the “sleep doctor,” Dr. Dsida came in and answered all of Charlotte’s questions about anesthesia. Her big one: How long will I be asleep? The answer: Just a bit longer than the procedure.  Dr. Dsida explained that an anesthesiologist would remain in the room the whole time to make sure she stayed asleep the whole time. He let her choose a flavor for the gas mask (cherry) and assured her that the IV would be inserted after she was asleep.

Next, Dr. Jeffrey Gossett, the interventionist responsible for the procedure came in. Boy, was he surprised by her 13+ list of questions. What I liked best was that Dr. Gossett started his answers be explaining that he wouldn’t know all the answers, not until he was doing the procedure.  He showed Charlotte his “bag of tricks” because a lot of her questions were around the instruments that he would use to take his measurements and do his magic. He deftly avoided the question about “how will you make the cut in my leg.”

Dr. Gossett explains that Charlotte was born with her “plumbing” not quite right and that he is essentially going to check out how the pipes are now and see if he can help them a bit.

Charlotte checking out a balloon.

And, off she went with Dr. Rivera, bravely kissing us good bye at the door.

Phil and I sought a comfortable waiting room and settled in. After about two hours we got the call you already know about, from Jean, informing us that Dr. Gossett had decided to go ahead with a balloon procedure (which he does only after assuring that the surgeon, Dr. Backer, is in the building and not in a tricky part of another surgery just in case of complications).

We waited another hour and there was Dr. Gossett striding across the waiting room to see us. We had settled in on the sixth floor in the surgical waiting room–warmer, no kids, and more comfortable–and he’d never been there!  He took us to a consultation room where he walked us through the procedure (more on that tomorrow), and assured us that he was happy with the results.

We found Charlotte groggy, but awake on the 15th floor, the Regenstein Cardiac Care Unit, one of the marvels of the new Ann and Robert H. Lurie Children’s Hospital. (More about that later, too.)

Bubba, always upside down and never far away.

She watched t.v. and counted the minutes until she could sit up and eat.

“Since I missed breakfast, I’ll just have chocolate milk, a Go-gurt, a waffle (only if there is syrup), oatmeal, and pudding, please.” And at 7:30 p.m., she joined the “clean plate club.” Never taking her eyes off the television, by the way.

Then, after a chest x-ray, she grabbed that trusty (and filthy) bear–who has been with her all day, even in the catheter lab–and fell into a deep sleep.