Flashback #6: Have You Heard Charlotte Tell Her Own Story? (#CHDAware, #TBT)

Charlotte reminded us last night that it is exactly 6 years since her third surgery. So, in honor of her strength and without further ado, my post from February 24, 2015:

“Charlotte’s Story: The Road to a Healthy Heart”

Sometimes I’m so proud of my kiddo, I could just burst. This is one of those moments. She was asked earlier this month (February 2015) if she would contribute a blog post to “Life Inside Lurie Children’s: The Official Blog of Ann & Robert H. Lurie Children’s Hospital.” Despite the month she knew she had planned, she said yes. And she said it without hesitation. We talked a lot about what she’d write, but she didn’t start drafting it until February 14, just 3 days after her surgery. She dictated it to me.

So without further, ado, I invite you to follow the link below to read Charlotte’s Story: The Road to a Healthy Heart. Or, read it below:

*Bonus for reading to the end—there’s a video and you can hear more about our Lurie Children’s experience.

February 23, 2015

Charlotte, age 9, underwent her third open-heart surgery at Lurie Children’s just days ago. She shares her story below in honor of American Heart Month.

Hi. My name is Charlotte, and I’ve been a patient at Lurie Children’s since I was 12 hours old. In January 2005, I was diagnosed when my mom was pregnant with me with a congenital heart defect called truncus arteriosus. I was supposed to be born in June, but I arrived a little bit early, on May 9. I’ve been going to Lurie Children’s for follow-ups my whole life.When my parents told me we were moving to Boston in 2010, my first and only question was, “What hospital will I go to?” We moved back to Chicago in 2012. Although I was sad about leaving my friends in Boston, I was relieved to be returning to my favorite hospital.

My parents have told me many things about my previous surgeries, but I can hardly remember.

Recently, I started to get more tired than usual, and it got challenging to run and play with my friends. I told my parents, and we went to see Dr. Luciana Young, my cardiologist, the following Thursday. I had an echocardiogram, an EKG and an MRI. When I was little, my heart was missing a part. The surgeons replaced that part with a Dacron tube, called a conduit. However, since the conduit does not grow with my heart, my doctors needed to see if it still fit. All the tests showed that it was time for my conduit to be replaced.

We scheduled surgery for this February. I was nervous, but also fascinated, because I did not remember my previous two open-heart surgeries. But now, days after my surgery, I’m already feeling like myself again.

I think that hospital-wise, Lurie Children’s is the closest I will get to home. Not only is it just six miles from my house, but the staff makes me feel as comfortable as a kid coming out of open-heart surgery can possibly feel. Even though I wasn’t always my best self, (mostly because of the pain medication), the doctors and nurses never seemed to take it personally (or at least didn’t show it if they did). Taking out IVs has always been hard for me, but the doctors and nurses who work at Lurie Children’s helped me a lot. This time, taking out the stitches around my central line was actually worse!

On the last day of my stay, I was very excited to go home. Even though the doctors, nurses and other staff at Lurie Children’s take great care of me, I always feel the most comfortable at home.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s