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LIVING WITH A PACEMAKER
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Courtney's Story


She was just a little thing, as black purple as the sky on a moonless night, and cold, even though the room was warm. I stood at the head of the incubator, instructed by the nurse to hold an oxygen tube to her face while she cleaned her off. This was my niece, Courtney, and she was only minutes old. She stayed in the hospital for a week after her mother was sent home.

 

It Started with a Seizure


And a misdiagnosis


"Your daughter has epilepsy," stated the doctor, after hearing about the things 1-year old Courtney was doing. When the EEG, and CT came back normal, he prescribed seizure medicine: Depakote and Topamax. The dosage had to be adjusted twice. When the seizures seemed to come more often, and at a stronger level, Courtney's parents took her to MCG. There, she was seen by Dr. Sekul. Courtney was then 5 years old, and since Dr. Sekul had not seen any of the episodes she could only go by what the records were showing. Even though she ran the usual EEG, CT and MRI, the tests still came back normal. Several options were considered and it was decided that a Vegas Nerve Stimulator would help Courtney, and she was scheduled for surgery on Nov. 1, 2003.

Here's my girl, coming to get her hug!


Courtney loves to playing with her brother and her toys, but mostly, she just loves the attention!

How to Tell When It's Bad News

"Are you sitting down?"


I was in Florida when I got the call. The experts are only now just talking about people literally dying from "broken hearts" and I'll tell you, I almost did. Courtney has been my little shadow ever since the day she was born. Ours is a close knit family, and I love Courtney and her brother Wayne very much. It was my brother, Courtney's father on the other end. "Courtney doesn't have epilepsy," he stated. Knowing what Courtney had been going through for the past 5 years, I felt my heart sinking. "What does she have?" I asked. "She had twenty seizures Monday and we brought her to Children's MCG Tuesday after she had 20 more." "What's going on?" I asked. "She was in the bed and Dr. Sekul was talking to her. Courtney's eyes rolled up into her head and she just fell over," my brother stated. "Dr. Sekul said she didn't know what was going on, but Courtney most definitely did not have epilepsy. She ran some tests and Courtney has a Type 2 heart block. She's being transported to Children's at Egleston's in Atlanta for pacemaker surgery tomorrow." I felt like I'd been punched in the gut.

 

Keith went on to tell me that Dr. Sekul had ordered an overnight heart moniter test and that he and Courtney's mother would have to record whenever Courtney's heartrate dropped below a certain level. As I recall, it was something close to 30 times -- I'll have to ask.


Children's Healthcare of Atlanta

"I'm Ticker, he's Toc!
Thursday afternoon, my brother called to say that Courtney was back at Children's MCG recuperating, and that she did indeed have bradycardia. Courtney was released Friday afternoon and kept her mom & dad awake until midnight, even though both of them were functioning on lack of sleep over the events of the week. The following weekend, I went home, to visit my parents and to see Courtney. Dad had been diagnosed with prostate cancer and it had metastasized to bone cancer so he was now in a wheel chair. I was sitting with him out on the back porch when Keith & his family drove up. My first thought was "Wow, she's just amazing!" Courtney came running up the steps onto the porch and hugged everyone. The child practically glowed with better health! We had never seen her run more than 10 feet before coming to a stand-still and gasping for air, and here she was, not even out of breath! "I love you and my ticker too!" She exclaimed, pulling up her shirt to show everyone her bandages. Courtney's pacemaker is in the lower left section of her stomach wall and the wires run up the center of her chest just under her skin. Dad asked my brother how long she had to use it. He cried when he was told it was what kept Courtney alive.

In the midst of watching Courtney grow healthier, Dad lost his battle with cancer. We buried him July 19, 2004. We're all glad he lived long enough to see Courtney blossom into the beautiful little girl she has become.

In 28 months, we have watched Courtney grow from being a child who slept most of the day, kept dark circles under her eyes, a shallow complexion, and quiet behavior into a full-time, take charge, easily excitable, loud speaking, race-you-to-the-house, "watch-me", "I'm not tired" little girl. She is now in 1st grade and is doing well.

Courtney's parents were both tested for heart health and doctor's discovered that Courtney's dad also has bradycardia. He started having real problems this past Thanksgiving, and had pacemaker surgery the first week of February, 2006. Courtney, on introducing him to her friends, says, "I'm Ticker. This is my dad. He's Toc."

She's just coming out of one of her episodes.



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Updated February 12, 2006 for my niece Courtney & my brother, Keith.
Copyright, Denise Babbit, 2005-2006