The Long Way Home

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Danielle DeVenio

Tyshaun Long can barely contain his energy as he bolts for a turn on the slide – typical for an active 9-year-old who loves playing at the park. Despite a small brace on his foot and a scar that crosses the top of his head, no one would guess the young boy charging the playground equipment with a grin on his face spent his first two years living in the hospital, fighting to breathe on his own.

Tyshaun Long_The Long Way Home

Tyshaun was born six weeks before his due date with symptoms of a condition called Pierre Robin Sequence. His birth defects included a cleft palate and an extremely small lower jaw (micrognathia), which pushed his tongue to the back of his throat, obstructing his airway and severely impairing his ability to breathe and swallow. He also had a club foot, which was unrelated.

“I was so scared,” says Tyshaun’s mom, Michelle, of her newborn son. “He was so little and helpless – I was just praying he’d survive.”

Unable to breathe without help, Tyshaun was intubated and put on a ventilator in the CHKD neonatal intensive care unit as physicians assessed the severity of his complex medical conditions. In the days that followed, Dr. David Darrow, a pediatric ear, nose and throat specialist at CHKD, performed a laryngoscopy – a procedure that allowed him to look closely into Tyshaun’s throat.

Unfortunately, he found additional sites of obstruction in Tyshaun’s airway. With no simple solution for all of his defects, Tyshaun’s medical team decided to provide supportive care to help him breathe while his jaw was given time to grow. At just 5 weeks old, Tyshaun had a tracheotomy, a procedure that enabled him to breathe through a tube directly into his windpipe, bypassing his upper airway. He also had a gastrostomy tube or G-tube, which was inserted into his abdomen to deliver nutrition straight to his stomach.

Tyshaun was moved to CHKD’s transitional care unit (TCU), the only one of its kind in Virginia that prepares patients who are technology-dependent for the next level of care. Children in the TCU often have serious pulmonary conditions, as well as other problems related to premature birth, traumatic brain injuries, and chronic lung, gastrointestinal and neuromuscular diseases. Many stay for several months or even years, like Tyshaun.

“Tyshaun’s case is an excellent example of the multidisciplinary approach we offer in the TCU,” says Dr. J. Francisco “Frank” Chocano, a pediatric respiratory and sleep medicine specialist at CHKD who cared for Tyshaun. “These children have complex medical conditions that require care from many specialists, and at CHKD we are able to bring all of the services a child needs right to him in the TCU. Our main goal is to treat these children and train their families to care for them so eventually they can transition from life at the hospital to care at home. The TCU is absolutely a team effort.”

In addition to Dr. Chocano, Tyshaun saw many physicians in the TCU – specialists from neurology, dermatology, sleep medicine, allergy and the craniofacial center. He underwent surgeries to correct his club foot and repair his cleft palate. He received occupational and physical therapy, speech therapy and rehabilitation services.

Tyshaun Long 2_The Long Way HomeHis CHKD care team also recognized the importance of Tyshaun’s developmental and emotional needs. Child life specialists engaged Tyshaun in play therapy, bringing him toys, playing peek-a-boo and taking him to the hospital activity room to interact with other children. CHKD nurses, social workers and therapists celebrated Tyshaun’s first words, first steps and first birthday. Michelle, who visited her son every day, and the entire CHKD team worked toward the same goal – getting Tyshaun well enough to leave the hospital.

“There were times when I wondered if he’d ever come home,” says Michelle. “But he was surrounded 24/7 by people who truly cared about him and wanted him to make progress. They were like our extended family.”

Though he was growing and gaining weight, Tyshaun’s airway remained at risk of collapsing if his breathing tube was removed, which made it too dangerous for him to leave the hospital. In 2009, CHKD pediatric plastic surgeon, Dr. Jesus Gil B. Inciong and the CHKD craniofacial team recommended reconstruction to lengthen Tyshaun’s lower jaw. “We felt this would create more room for his tongue so it would no longer block his airway,” he says.

The surgery took nearly seven hours to complete. During the operation, Dr. Joseph Dilustro, CHKD pediatric neurosurgeon, removed cranial bone from the child’s skull, and Dr. Inciong then grafted the cranial bone to Tyshaun’s lower jaw, adding several centimeters to each side, moving the jaw and tongue forward and opening up the back of the throat. The surgery was a success. After six months of recovery, Tyshaun’s airway was much more stable. Though he still needed his breathing tube to keep his airway open and support his breathing, he was finally discharged from the hospital.

“Bringing Tyshaun home was thrilling,” says Michelle, who meticulously followed the trach tube care instructions she received from training in the TCU. “It was exciting and scary at the same time.” In the months that followed, Tyshaun underwent several follow-up surgeries at CHKD including procedures to remove his G-tube and his adenoids. In 2012, just after his 5th birthday, Tyshaun’s trach tube was removed. He was finally breathing on his own.

Today, Tyshaun and his mom are both breathing easy. Tyshaun loves to run and play, and only uses a CPAP machine to manage his sleep apnea and breathing at night. “Tyshaun’s progress from his start in the NICU until now is outstanding,” says Dr. Jennifer Wiebke, a pediatric pulmonologist and sleep medicine specialist at CHKD. “Through everything, he has always been such a positive, happy kid.”

Tyshaun makes regular visits to his CHKD specialists for follow-up care and to Dr. Heidi Flatin, his CHKD pediatrician, for routine check-ups. As Michelle and Tyshaun page through the scrapbook she kept during his stay at CHKD, she still remembers the name of every doctor, nurse, social worker and staff member who touched their lives. “I am so grateful that CHKD had all of the specialists he needed, right there – to care for him and make it possible for my son to have the life he does today.”

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