On a sun-drenched summer day, Luke Martine, 3, is playing on his backyard swings with his brothers Alec, 5, and Cole, 8. As he watches the older boys proudly demonstrate their swinging skills, Luke begs to be pushed higher and higher.
It’s a typical day in the life of these boys, yet this perfectly ordinary scene is something that their parents, Becky and Chris Martine, never thought would be possible.
“As soon as I delivered Luke, the doctors knew something was wrong,” explains Becky. “His skin was dusky and his oxygen levels were low.”
After five days in the hospital and a host of tests that included multiple spinal taps, EEGs, and MRIs, the doctors were no closer to figuring out the cause of the baby’s distress. They transferred Luke to the Children’s Hospital of Philadelphia (CHOP) where, after two more weeks of testing, Becky and Chris finally learned that their youngest son had Congenital Central Hypoventilation Syndrome (CCHS).
According to the CCHS Family Network, there are only an estimated 1,200 cases of CCHS in the world. The condition affects the automatic control of breathing, primarily during sleep for the majority of patients. These individuals do not take in enough oxygen and retain too much carbon dioxide. There are numerous complications associated with CCHS including seizures and blue spells, which are brief periods when a reduced amount of oxygen flows into the lungs, causing the child to turn blue. Other complications can include Hirschsrung’s disease, which causes problems with passing stool, and neuroblastoma, a cancer of the nervous system that occurs most often in infants and young children.
“When he is awake, Luke is a normal little boy, but when he goes to sleep, his respiratory system also goes to sleep,” explains Chris.
At four weeks old, doctors inserted a tracheostomy tube in his neck, which, along with a ventilator, helps ensure that Luke does not stop breathing while asleep. When he is awake, his trach is capped and he is off running.
Becky and Chris juggled caring for their older sons while maintaining a steady presence at Luke’s bedside during their 10 weeks at CHOP. “It was so hard,” says Becky. “My parents were staying with the boys. We would run home to tuck them in and then drive back to CHOP to sleep. Cole and Alec had birthdays, turning just 2 and 5, and then there was Mother’s Day, but we could not leave our infant son alone in the hospital.”
Fortunately, the overwhelmed couple soon learned that they could take Luke home, but they also realized they needed help to handle his complex medical needs. After interviewing two home health care agencies while at CHOP, Becky and Chris talked to Mary Simrell, RN, a transitional care manager with BAYADA Pediatrics, a specialty practice of BAYADA Home Health Care.
“When we met Mary, it was a game changer,” says Becky. “She gave us loads of information, answered all of our questions, and helped us understand what to expect. It made choosing BAYADA an easy decision.”
Through the BAYADA Transitional Care Program, families receive the support they need to safely transition their children with complex medical needs from the hospital to home.
“I wanted Becky and Chris to know that a team of health care professionals would be there to take care of Luke when he came home,” shares Mary. “While the baby was still in the hospital, I introduced the family to the RN clinical manager who would oversee all of his care. They also met several of the nurses who would be coming into the home.”
Today, Luke has eight nurses who are part of his BAYADA care team. Three of those nurses have been with the Martine family since Luke’s first day at home. Luke receives sixteen hours a day of nursing care. The nurses monitor his tracheostomy, ventilator, and vital signs when he sleeps, suction his tracheostomy during the day, and help ensure he is a content, happy, little boy. In fact, a typical day for Jami Smith, RN, one of Luke’s nurses, usually includes taking a trip to the playground, putting on superhero costumes, and helping Luke keep up with his brothers.
“It’s so much fun to take care of Luke,” says Jami. “He has a great sense of humor and he knows exactly what to do to make me smile. I love watching him grow!”
Becky considers the nurses a gift. “I know that Luke is getting great care, which allows me to concentrate on Cole and Alec’s needs as well,” she says.
Her husband agrees. “We trust our nurses fully and have confidence that Luke is safe,” says Chris. “It gives us the freedom to do the things that three years ago seemed impossible, such as a recent trip to Disney. Jami came along and blended right in with our family.”
Although they are happy with Luke’s care, Becky and Chris acknowledge it can be a challenge to have other people in your home.
“It was definitely hard at first,” says Becky. “I thought I had to be ‘on’ all the time when the nurses were in the house, and I didn’t want to rely on other people to take care of my baby.”
Chris also found it hard to adjust. “Having the nurses brought a new dynamic into our home. We had to consider Alec and Cole and how they were going to react. Fortunately, our boys love the nurses. In fact, sometimes they even forget that the nurses are here for Luke.”
Debra Magaraci, director of the BAYADA Pediatrics office in Voorhees, NJ, works to ensure that there is a good match between the client and the nurse. “A nurse may not be right for one family, but might be perfect for another,” she said.
As far as Luke is concerned, his nurses are perfect matches. On this sun-drenched summer day, Jami responds to Luke’s request to go higher and higher by giving him a gentle push on the swing as the little boy laughs with joy.
Becky and Chris smile while watching their boys at play, with Jami keenly watching Luke from the sidelines. They are so grateful to have nurses from BAYADA, who are dedicated to helping Luke live a full life at home.
The CCHS Family Network and Foundation is a non-profit organization focusing on education and support for CCHS patients and their families, and raising funds to support research into new treatments and hopefully, a cure.