Family Care Services improves quality of life for family
Frank Boschma is a 13-year-old 7th grader that lives in Riverside, loves movies, and has spinal muscular atrophy.
Frank Boschma is a 13-year-old 7th grader at Amelia Earhart Middle School in Riverside. He is a twin with his sister Katie. He loves movies and his favorite classes are French and theater arts. And for the last 11 years of his life a nurse has nearly always been by his side.
Diagnosed with spinal muscular atrophy, a type of muscular dystrophy, when he was 2 years old, Frank was sent home with no expectations to live. But if you spend a day with him, you will quickly realize he is not one to cater to others’ expectations.
He is strong-willed and stubbornly independent, much like other 13 year olds. In class, he argues with his nurse, Barbara Nichols, over using his cursive penmanship. Undeniably more legible than his printing, he simply prefers to print. He holds out until his teacher requests cursive. When he switches to it, his work goes visibly faster and his teacher praises him for it.
Ms. Nichols, who has been a nurse for 35 years, has spent the last four working with Frank, the last two full-time. She reports for the early day shift starting at 6:30 each morning, one of the three shifts that provide the 22-hours of nursing care from family care services, a division of home care services at Loma Linda University Medical Center. Originally Frank received 16 hours of care, but three years ago family care services agreed to up that to 22. And that has made all the difference for Frank and his family.
“We can’t say enough about Loma Linda and Family Care Se
Barbara Nichols, RN, LLUMC family care services, provides a treatment of albuterol to Frank during social studies class to help his breathing.
rvices,” say Greg and Christy Nishkian, Frank’s parents.
“Without them, we couldn’t do this,” says Greg Nishkian, Frank’s stepfather. “I couldn’t work. Christy wasn’t able to be a mom to him. Before they started with the 22-hour nursing support, he was receiving 16-hours of care and Christy had to give up being a mom in order to be a full-time care-giver. Now she can be a mom to him again.”
“The nurses maintain his health really well, so we haven’t had a lot of reasons to go back to the hospital, even for pneumonia which is rather common for others with his diagnosis,” says Mrs. Nishkian.
Frank is healthy enough to go to school everyday. He is second on the list in the morning roll call for his first class, French. The teacher calls “Franklin,” and he replies “Here,” in a low whisper through his trach tube. In class, Frank is able to describe what he is wearing to a classmate verbally. The classmate is concentrating hard to hear his quiet voice against the noise of the classroom.
Ms. Nichols works very closely with Frank on his class work and his health needs, which include everything from draining his mouth of gathering fluids and clearing his trach tube, to administering medications and feeding him through his G-tube.
She applies treatment and suction for saliva, and helps adjust Frank’s seating in his wheelchair. This involves unstrapping him and physically repositioning him to sit back in the chair. This care is all done right in the classroom.
After French class, Frank and Ms. Nichols head to another classroom, where teacher Lisa Miller will be teaching language arts, math, and social studies. Frank thanks a classmate who clocks him in for his second period class, language arts.
In math, Frank’s class learns about graphs and they make their own bar graphs. Ms. Nichols, besides clearing out his trach tube, draws the graph for Frank and he fills the bars in with a green highlighter that he holds between his index and middle fingers.
During fourth period, Ms. Nichols checks Frank’s vital signs and gives him a breathing treatment of albuterol. The treatment takes place during class, as he finishes writing out definitions for social studies.
As his spinal muscular atrophy has progressed, Frank’s arms have become too heavy for him to write as much as he used to when he was smaller. The atrophy he is experiencing has robbed him of some of his independence, but he is learning to get help from others by verbally telling them what he wants. And his electric wheelchair that holds a ventilator on the back still allows him a lot of independence at school. Frank is very agile in his chair, doing donuts when he has the time and space to amuse himself and his classmates. The controls are sensitive enough for him to navigate with his left hand. He uses his right hand to do classwork on a lapdesk that fits snugly across his motorized wheelchair’s arms.
“I love movies,” says Frank before drama class begins just after lunch. “I have a whole bunch of movies. I have a DVD and VCR player.” His favorites include “Indiana Jones” and “The Abyss.”
With classes over for the day, Frank goes home, and Ms. Nichols rides the bus with him, just as she does in the morning. The stereotypical teenager attitude in Frank comes out quickly at home, with engaging in sarcasm being a favorite activity, and homework being the least favorite.
“You get a better feel for the patient in the home setting,” says Ms. Nichols as she transfers Frank from his wheelchair to the bed in his room. “If you build a relationship with the family; you can help the family, you can help the patient even more.”
“That relationship we have with family care services and the nurses is so wonderful,” says Christy Nishkian, Frank’s mother. “If we didn’t have that relationship, this wouldn’t work. They have a heart and it definitely shows that they care.”
“The first couple of years were so critical. It was tearing us apart with Christy doing so much. It was just overwhelming,” recalls Mr. Nishkian. “The only other route we could have taken was to institutionalize him,” he says. “And we didn’t want to do that. So thank God for family care services. Through their nursing care we have had the chance to have a normal family life.”
By Preston Clarke Smith