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December Calendar Kid: A team worth traveling for

Published by , on Dec 27, 2018

Though they moved from Richmond to North Carolina this past summer, Tiffany Spearman still brings her 5-year-old daughter Cayden to us for medical care. She wants to be sure her daughter stays in the caring hands that provided her hope when she needed it most.

We first met Cayden when she was six months old and facing serious birth-related complications. “She was born extremely premature,” Tiffany explains. “I was looking for a second opinion and brought Cayden to CHoR. Because of the quality of care she received here, she was able to progress better than I’d initially been told she could.”

December 2018 Calendar KidToday, Cayden is an inquisitive, happy kindergartner – and she’s already met many of the goals Tiffany had hoped for. “You really can’t even tell by looking at her that she was born at such an early age,” Tiffany is pleased to report.

Many specialists and specialties

One of the things Tiffany likes about our approach is the focus on helping parents learn and really understand what a child is going through and what they may need, even if it’s difficult at times. “They explain the treatment process, what will help, and the benefits of what they’re trying to do,” she says. “They give you all the information so you can help make a decision on behalf of your child.”

With a variety of needs, having Cayden’s specialists in one central location and able to coordinate her care was important. Our pulmonary team helped Cayden with breathing issues related to underdeveloped lungs, a common condition in infants born prematurely called bronchopulmonary dysplasia, or BPD. For almost the first two years of her life, Cayden relied on a mechanical ventilator, attached to a tracheostomy tube in her trachea (windpipe), to assist her breathing. Many in infants with BPD need special nutrition to grow and thrive and our gastroenterology specialists helped with Cayden’s nutritional needs. Until this past year, her nutrition was delivered directly to her stomach through a tube inserted in her abdomen (a gastrostomy tube) to ensure she received enough calories for successful growth.

When she was 21-months old, she had a surgery by our ear, nose and throat team to reconstruct her windpipe, which was narrowed because she needed a breathing tube as an infant; this allowed for the removal of her trachestomy tube. When she was four, Cayden had surgery to repair a soft spot on the front portion of her skull, a procedure conducted by our neurosurgery team. She sees our orthopaedic specialists for slight scoliosis and ophthalmology for eye issues that can be a concern in babies born prematurely. She has a compromised immune system, a complication she continues to face, and her overall health continues to be monitored by one of our pediatricians.

Over the years, the level of support and supportive equipment Cayden needs has decreased significantly as she’s become stronger and more stable. “She’s been able to be discharged from most services,” Tiffany says with much relief. “She comes for follow up care, but not for the main conditions she originally came for.”

Our budding writer

Cayden would like you to know that her favorite color is pink and that she’s five and will turn six in January. Like many kids her age, she enjoys gymnastics and dance classes. She also loves to dress up. Given the choice, she’d “wear a dress every day if she could,” according to her mom.

The elementary school Cayden attends specializes in Spanish, which, along with math and reading, are her favorite subjects. She’s chatty and engaged and loves to learn. “Cayden’s always asking questions to get more understanding about the world,” Tiffany says. “She loves to read, but at the same time she’ll talk your head off too.”

One of the complications of Cayden’s medical history is damage to her vocal cords related to the tube she had in her trachea. This affects her speech. “I can understand her,” Tiffany explains, “but others may have a difficult time because her voice is so soft.”

After the tracheostomy tube was surgically removed, Cayden came to our Brook Road location for speech therapy to help her with articulation and her overall speech ability. She was discharged from this in 2017.

This past August, under the care of our ear nose and throat specialists, Cayden had an injection to help the sound through her vocal cords be louder. The benefits of this type of vocal cord injection tend to wear off over time and a team led by ear nose and throat specialist Dr. Raj Petersson is currently working with Tiffany on the best plan to address this moving forward. Possibilities include a permanent nerve reconstructive surgical solution.

Moving past these challenges like the go-getter she is, Cayden came up with a special way to share her voice. She “authors” (her term) her own books. Cayden draws pictures on each page and tells her mom what to write to go along with them. Her stories are often about her family, the activities and foods she likes, and going on “holiday,” which is how she refers to vacations – also a favorite activity for her, especially if they involve the beach.

It’s wonderful to know that Cayden is at a point in her recovery where she focuses on what she enjoys in life, rather than on her medical challenges and what she’s been through. It says so much about how far she’s come.

“Her progress has been just amazing,” Tiffany says.

And we’re so honored to have played such a big role in the story of her life so far.

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