Boy forms special bond with Le Bonheur staff
In the first five years of his life, Juan Carlos Francisco-Pedro has spent most of his childhood as a patient at Le Bonheur Children’s Hospital.On average, he spends 282 days a year at Le Bonheur.
He’s been hospitalized 33 times.
In the course of those days, Juan has found his second family in the staff at Le Bonheur. They are lifelong friendships – the kind he and his family can lean on when they need them most.
Shortly after his birth, Juan’s mother, Maria Francisco, learned that her son had a gastrointestinal defect. Juan spent his first six months in the hospital’s Neonatal Intensive Care Unit (NICU) as doctors and hospital staff fought to keep him alive.
“When I discovered my son was sick, I got really scared,” Maria said. “I was so afraid that I started crying and crying because I was afraid of what was going to happen to my child. I didn’t know what was going to happen.”
In the last five years, dozens of physicians and nurses have cared for Juan, seeing him through multiple surgeries, numerous hospital stays – which at times would last for weeks – and constant visits to the Emergency Department.
A rocky start
Maria Francisco cries when she recalls her son’s first six months of life. When he was just 2 days old, it was clear something was wrong. Doctors discovered he had a bowel obstruction, and surgeons removed the blocked area and created an opening in his abdominal wall so he could pass solid waste. Two months later, a second surgery reconnected his intestines, and then a third removed adhesions and scars doctors thought were causing the reoccurring blockages.
Juan showed some signs of improvement after his third surgery, but soon the blockage returned. And finally, Juan had a diagnosis.
“We then looked for another reason as to why he was having recurrent intestinal blockage and that was when we diagnosed him with long segment Hirschsprung’s disease,” said Pediatric Surgeon Eunice Huang, MD. Nationally, about one in 5,000 people annually are diagnosed with Hirschsprung’s disease, a condition that affects the nerve cells in the large intestine and makes it difficult to pass solid waste.
Then another surgery, his fourth, created a permanent ostomy bag because his intestines couldn’t push foods through the intestinal tract. His intestines also needed have an outlet for stool.
Pediatric Gastroenterologist Mark Corkins, MD, described Juan’s first extended stay at Le Bonheur as “very rough and very rocky.”
“There were a lot of opportunities where he’s been sick and there were times where his life could have been threatened,” Corkins said. “But he seems to be very resilient and bounces back pretty quickly.”
In those first four surgeries, doctors removed large sections of Juan’s intestines, causing his bowels to be shorter than a typical child. Because his intestines are too short to process regular food, doctors inserted a gastronomy tube (G-tube) to help provide Juan with enough calories and nutrients. Doctors also inserted a central line for fluids and IV nutrition.
After four surgeries, Maria finally took Juan home after a six-month stay at Le Bonheur. Juan proved to be a fighter, someone who wouldn’t easily give up. Maria now calls Juan her “little warrior.”
Juan has spent nearly 1,500 days in the hospital. When Juan is admitted, he’s often treated for dehydration, severe stomach aches and fever. Doctors also are cautious about infections to his central line, which can lead to sepsis – a potentially life-threatening complication of infection.
Having her son in the hospital for a majority of his life is difficult, Maria said. With five other children, Maria tries to spend as much time as she can with Juan and his siblings. On nice afternoons, she’ll take her children to the park to play. Other days she’ll take them to the Children’s Museum or the Memphis Zoo. But when Juan is in the hospital, Maria rests easier knowing the special bond her son has formed with the Le Bonheur staff. For Maria, sending Juan to Le Bonheur is a mix of complex emotions.
“I feel sad because he doesn’t spend a lot of time with me, but on the other side, when he’s sick, I know the doctors will give him the medicine that he needs when he has a stomach ache or when he is feeling sick,” she said.
During his time at Le Bonheur, Maria has lost count with the number of doctors and nurses who have cared for Juan – too many to count she said. Jessie Dvorak and Molly Napier are Juan’s newest nurses. But the pair are more than nurses to Juan – they’re teachers and friends. When Dvorak, Napier and other Le Bonheur nurses have down time, they help Juan learn his colors, numbers and letters. They’ve also taught him how to properly brush his teeth and even helped with potty training.
On days when he feels well enough, Juan follows the nursing staff as they restock all the drawers in the unit. It’s a job the outgoing 5-year-old takes seriously.
“Some days I say, ‘Hey, Juan, do you want to go downstairs with me to lunch?’ and he says ‘I’m working. I can’t right now,’” Dvorak said. “Since he has spent so much time with us, he’s like our 12th floor child. My relationship is like a motherly relationship because I care for him constantly when he’s here. We’ve grown close to his siblings when they are here … We’re like one big, huge family.”
And “family” is how Maria describes the Le Bonheur nursing staff. When Juan isn’t in the hospital, Dvorak and Napier often stop by his Memphis home for quick visits. Building a lasting friendship with Juan and his family outside the hospital’s walls is important, Dvorak said. Not only does it build trust, but it also lets Juan experience the joys of a typical childhood.
“It’s important for him to be a kid when he’s discharged, and we want to make sure we’re part of that kid experience,” Dvorak said. “We want to make sure we’re doing our part outside of the hospital, too.”
That includes taking Juan and his five siblings on fun outings, like to the Memphis Zoo and bowling at Bass Pro Shops at the Pyramid. This winter, the two took Juan and his family to their first Memphis Grizzlies game, where they sat courtside for the team’s afternoon practice and met the players. This spring, their plans include Chuck-E-Cheese, playing laser tag and a trip to Jerry’s Sno Cones, a Memphis favorite.
“We do anything we can do with him since he hasn’t had a normal childhood so far,” Napier said.
But when Juan is around the hospital, he brings energy to 12th floor staff.
“With Juan we’ve all formed a bond and had an instant connection with him,” Napier said. “He’s the most loveable kid I’ve met. He’s always the bright spot of my day when he is here. He brings so much joy to the nurses on the 12th floor.”
Home at last
In early January, Juan went home after a short stay over the Christmas and New Year holiday, which was a bittersweet moment for Le Bonheur staff.
“When he’s home for a while he doesn’t want to come back, but when he’s here for a while he doesn’t want to go home,” Dvorak said. “It’s sad whenever he’s about to go home, but you’re glad he’s well enough to go home.”
Since his last hospital stay, Juan is slowly recovering and healing, Maria said. At home, Juan enjoys playing outdoors with his five siblings, playing with his Thomas the Tank Engine toys, watching cartoons – the “Minions” movie is one of his favorite – and spending time with the family’s new Chihuahua, Oreo. Juan will enter kindergarten this fall.
Beyond that, Corkins said Juan is a typical child who enjoys visiting with Le Bonheur staff and remains thankful to those who gave him a fighting chance at life.
“In every way he’s your average 5-year-old except he has spent a majority of his life in the hospital. He has a central line, he has a feeding tube and he has an ostomy bag,” Corkins said. “Put a shirt on him and a pair of jeans and you’ll never know.”
Although no surgeries are planned, Corkins said Juan will need constant care. As he gets older, his bowels will continue to grow, but he’ll still need a G-tube and central line for nutrition and medications to help make his bowels work efficiently. Extended hospital stays are still a possibility.
Despite living most of his life at Le Bonheur, a place Juan and Maria call a second home, he continues to inspire the hospital staff with his upbeat personality.
“Because he’s been through some rocky times, he knows we care about him, and I think he knows people here are trying to take the best care for him,” Corkins said. “He’ll smile at you even when he doesn’t feel good, and people here love to take care of Juan.”