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Believing in Miracles, Working on Walking
Josh Hurd & Deb Deluca
Eight-year old Josh Hurd is a handsome young boy, with dark hair, beguiling eyes and an inquisitive look. As a second grader, he attends Seth Lewelling Elementary School in the North Clackamas School District where he is surrounded each day by classmates, many of whom have known him since kindergarten.
He loves to read, go roller skating and take trips with his grandparents.
Josh also has SMA, or spinal muscular atrophy, which has deprived him of his physical strength and taken away his ability to walk, eat or breath on his own.
That’s where MESD’s one-to-one nurse Deb Deluca comes in.
Deb is Josh’s lifeline to the world of education, as well as his friend, teacher and daily companion. Deb has been caring for Josh since he was seven months old. By becoming familiar with Josh’s facial expressions, his eye movements and other subtle cues, Deb knows his wants and needs intimately. She enables him to attend school every day.
Despite what most people might see as his profoundly-limited physical capacity, Deb focuses on what Josh can do – not what is out of his reach.
“I want people to see his abilities, not his disabilities,” said Deb.
During a visit with Josh at Lewelling, Deb explained how medical technology allows Josh to attend school with his friends and get the education that he deserves.
Rather than sitting at desk or table, Josh reclines in a special chair to which is attached a ventilator, a cough assist device, a gastronomy tube, and a heart rate and oxygen monitor. All this apparatus is required to keep Josh alive – but it also allows him to thrive in his classroom. According to Deb, his condition does not affect his immune system and Josh did not miss any school days last year due to illness.
Deb also has a little wagon in which she stores an extra oxygen tank and an ambu bag for manual ventilation if needed.
And all the while, Deb is at his side – every minute of every day.
She is ready to suction his saliva when it accumulates in his mouth or to read to him or to prepare his g-tube with a specially prepared nutritional mix that is made from scratch.
To his friends in second grade, Josh is different for sure, but he is still fully integrated into almost all classroom and school activities.
Deb says that other students in his class speak up for Josh and “never leave him out.”
“They are his advocates,” Deb said.
A career in pediatrics
Deb Deluca has been a nurse for over 30 years, always in practicing in pediatrics. She has also provided home care for children with disabilities. That's how she came in contact with Josh when he was seven months old.
Caring for children with severe disabilities is a life calling for Deb. She is fully committed to Josh, as she has been to many children with whom she has worked over the years.
“I love it because I can make a huge difference,” she confided. Deb relishes the professional opportunity to be a “voice” for students whose fragile medical conditions may diminish their participation in school and life.
Prior to working at MESD, Deb was a nurse at Emmanuel and Good Samaritan hospitals and with Portland Public Schools. She has been with MESD since 2004.
Deb appreciates Josh’s very supportive family, including his grandparents who take him and Deb to activities in their van. His favorite activity is to go roller skating – Deb gets on some skates and pushes Josh in his specialized stroller.
He also spends some time in the LEEP classroom operated by Clackamas ESD.
Josh will soon have a new assistive technology tool to used for communication that uses “eye gaze” technology, said Deb.
Eye gaze technology is an eye-operated communication and control system that empowers people with disabilities to communicate and interact with the world. By looking at control keys or cells displayed on a screen, a user can generate speech either by typing a message or selecting pre-programmed phrases.
Although Deb may spend up to seven years with an individual student, she knows that at some point, both her student and herself will have to move on.
“I don’t want my student to be too dependent upon me, but rather be as independent as possible,” she said. That means that at some point, as Josh gets older and goes into high school, Deb will step away from her current role and hand that responsibility off to others.
Deb draws praise from MESD Supervisor Christy Fawcett
“Deb has been a one-to-one nurse for over 20 years and has worked in a variety of settings from acute intensive care to the school setting. Deb is highly skilled and always has students with the most complex of health needs,” said Christy.
“Deb practices using a holistic approach and recognizes the abilities and strengths of every child she encounters. Deb brings amazing nursing skills along with the heart and soul of a truly gifted person. When I am looking for a nurse to teach others on ventilator skills and how to manage this type of medical technology in the school setting, Deb is my ‘go to’ nurse. MESD, our students, families, and faculty are very fortunate to have Deb as a member of our team,” she said.
According to Christy, there is a unique skill set that MESD looks for in one-to-one nurses. “We look for a nurse with strong technical, communication, and organizational skills. We also look for a nurse that can work in a variety of settings and with minimal direct supervision. Our one-to-one nursing team is flexible and creative as they work in a variety of settings from general education classroom to a trip to the zoo.”
Currently MESD has approximately 36 students attending school with a one-to-one nurse. Several students who attend are ventilator dependent and attend with a nurse that is highly skilled in the complex management of ventilator dependent children.
MESD has one-to-one nurses in five Multnomah County Districts. MESD also has one-to-one nurses working in many districts in Clackamas County. One-to-one nurses provide care in the early childhood programs all the way through the post-secondary programs.
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