J. Tyler Raphael Sheets was born Feb. 14, 2006 at 28 weeks. Exposed to drugs in utero, J weighed just 2 pounds, 4 ounces. He spent nearly three months in the neonatal intensive care unit surmounting cardiomyopathy, renal failure and sleep apnea. He failed a premature hearing test, and doctor’s questioned his vision. His care included audiology, cardiology, endocrinology, genetics, neurology, orthopaedics and ophthalmology.
J went home with his adoptive parents on April 10, 2006.
“He screamed a lot with pain we couldn’t fix,” remembers Monica Sheets, his adoptive mother.
J soon began missing developmental milestones. Severe reflux impaired his ability to eat and required a feeding tube. By age 3, doctors confirmed that J also had cerebral palsy and cordial blindness.
“He may not be typical, but J is a fighter, and we are blessed to have him,” Monica says.
As J approached school age, Monica wondered how he would attend school with his acute medical needs. Monica had two other children at home and could not escort J herself. She understood that a teacher alone could not provide the undivided attention J required. She turned to the Christiana Care Visiting Nurse Association.
Bobbi Jo Lorah, RN, is one of several VNA private-duty nurses trained to perform one-on-one medical care for chronically ill children at home or at school. Monday through Friday, Bobbi Jo provides personal care for J before accompanying him to school. There she monitors J’s condition, administers daytime feedings and medications, and assists him with classroom activities. She also attends doctor and therapy appointments to support success at home.
With VNA’s help, J attends school and shows progress in cognitive learning from a year ago. Communication switches enable him to convey preferences and to participate with peers in classroom activities, while a compression vest helps calm uncontrolled movement. One-on-one interaction with his nurses reminds J that he is safe, even away from home. As a result, J has improved noise toleration, mobility and impulse control, as well as a greater awareness of people and his surroundings. His mother attributes his success to those around him.
“J is the opposite of everything he should be,” Monica said. “He is clinically blind, but he can see a little. He wears hearing aids for deafness, but he can hear high-pitched noises. He has cerebral palsy, but his muscles are uncharacteristically loose. It is the love and support of our family and our extended family, J’s VNA nurses, who are responsible for his progress.”
Such high praise is humbling. “Watching J achieve milestones people said he’d never reach is so rewarding,” said Bobbi Jo. “I’m glad to be a part of his journey.”