When Leilani Rodriguez, 6, hears that distinctive knock every weekday morning, it’s a sure sign that one of her nurses will soon be walking through the front door.
“Leilani absolutely loves her nurses,” said her mom, Jennifer Barbosa. “She simply lights up when she sees them!”
Indeed, for Cyndi Cartier, RN, who cares for this sweet little girl at school, the feeling is mutual. “She is a sweetheart,” said Cartier. “She is so easy going, and happy, and friendly. I love working with her.”
Leilani, who has significant physical and developmental delays, is also at high-risk for seizures. Her doctor felt that one-on-one nursing care at school would help ensure her safety while away from home. She attends The Atlantic County School for Special Services, which provides her nursing care through a contract with BAYADA Pediatrics, a BAYADA Home Health Care Specialty Practice.
Although non-verbal, Leilani has no trouble communicating her wants and needs to those who love and care for her. Her favorite toy, a music box, is a constant, calming influence with its soothing, symphonic lullabies that make her smile. Before leaving for school, her mom and her nurses always make sure there are enough batteries to keep the music flowing throughout the day!
According to Barbosa, Leilani has never received a definitive diagnosis to explain her multiple health challenges. At birth, everything seemed fine. However, as the baby neared her first birthday, Barbosa worried and wondered why her little girl had not reached all of her developmental milestones.
Then, the seizures began.
Called infantile spasms, Leilani experienced sudden, uncontrolled jerking movements that occurred in clusters. What’s more, the baby began to regress. “She stopped rolling over, stopped taking her bottle, and stopped sitting up,” explained Barbosa.
As Leilani grew older, the seizures changed in nature and severity, prompting her doctors to try many different types of medications to get her fragile body under control. What’s more, unable to take food by mouth, Leilani relied on a NG tube that passed through the nose and into the stomach for her nutritional needs. At age 2, she had surgery to insert a G-tube through the abdomen, allowing food and medication to be delivered directly to the stomach. Today, Leilani has been seizure-free for three years.
During a typical school day, the nurses ensure she gets her nutritional supplements and medication through her G-tube. In addition, they work in tandem with physical therapists to help Leilani learn to walk and spend less time in what her mother describes as a “wheelchair stroller”. They also partner with speech therapists on teaching Leilani how to chew, swallow, and eat by mouth.
“She eats better for the nurses than she does for me,” said Barbosa, who describes her daughter’s favorite foods as peanut butter and jelly, mashed potatoes with gravy, and strawberry yogurt.
“She is making great progress!” exclaimed Cartier, who, along with her colleagues Mary Ann Michelfelder, RN and Marjorie Smith, RN, share the role of taking Leilani to school five days a week.
“Thanks to the nurses, I don’t have to worry about Leilani being at school,” said Barbosa. “She is such a happy, well-mannered child who doesn’t complain. She’s always seems so content that it’s easy to forget about her. But I know that the nurses always have their eyes on her. She gets great care!”