Home care makes a difficult life easier for Edgewood girl, 11, and her family

May 29, 1994|By Karin Remesch | Karin Remesch,Contributing Writer

Say the word hospital to 11-year old Carol Lena Cannistra and her generally sunny disposition is immediately shadowed by sadness.

After 15 major operations and 14 bouts of pneumonia, Carol Lena gets depressed just thinking about hospitals. Even a visit for a routine checkup is a traumatic experience for the Edgewood girl.

But lately, Carol Lena doesn't mind medical examinations and treatments.

Carol Lena, who was born with multiple birth defects and is paralyzed from the waist down, is a patient of Johns Hopkins' Pediatrics at Home, a comprehensive home-care agency created months ago as part of the Johns Hopkins Home Care Group.

The agency, on Broening Highway in Baltimore, provides virtually all the services that are available in a hospital, including nursing care, infusion, occupational and physical therapy, pain management, oncology, neonatal follow-up and compassionate care for dying children.

Hospital equipment such as specialized beds and ventilators, pharmaceutical and medical equipment also can be supplied.

Having spent almost half her life in hospitals, home care has become an answer to prayers for Carol Lena and her family, said her mother, Josephine Cannistra.

"It's a blessing for our family that we don't have to be separated. A child with special needs takes a toll on the entire family, but we manage much better when we are together . . . and Carol Lena is much happier at home," said Mrs. Cannistra. "It's also great seeing the same professional staff who knows my daughter's condition."

After skillfully maneuvering her wheelchair through the kitchen, stopping quickly to hug her mother and whisper "I love you," Carol Lena said, "When I was in the hospital, I couldn't do anything, I was just lying there. But at home I have my own room, I can watch wrestling on television with my dad, I can play with my brother, and I can help with the dishes . . . and I love the nurses that take care of me at home."

Judy Davis, one of two nurses who visit the Cannistra home, first met Carol Lena when she was hospitalized last fall at Johns Hopkins Children's Center.

Carol Lena had been admitted to the Children's Center shortly after the family moved from New York City to Edgewood.

She was suffering from decubiti -- severe bedsores the size of grapefruits -- and a chemical imbalance. And being hospitalized again after recently being released from a nine-month stay in a New York hospital resulted in deep depression.

"She was a very sick girl," remembers Ms. Davis. "She was deeply depressed, her appetite had decreased to a point where she didn't want to eat or drink anything, she never smiled, nothing exited her. . . . The thought of being away from her parents, her home, her own environment just was too much for her."

And the rest of the family -- Mrs. Cannistra, her husband, Anthony, and their 7-year-old son, John -- also was affected.

"We were just beginning to settle into a new home and into a family routine when we had to pack her up again and take her to the hospital," said Mrs. Cannistra. "It's such a trauma for her, always the fear of having to stay and be away from home for a long time."

Mrs. Cannistra calls her daughter her miracle child.

Before Carol Lena was born, doctors said that there was only about a one-in-a-million chance for a child with so many birth defects to be born alive.

They didn't expect her to survive the day.

Carol Lena was born with spina bifida, a defect of the spinal cord. She also was born with extra fluid on the brain, dislocated hips, club feet, scoliosis, one kidney the size of two, two bladders, two uteri and cloacal exstrophy -- an eversion of organs.

"Everything from the waist down had turned inside out. Her intestines were outside of the skin," Mrs. Cannistra said.

Major operations repaired some of the damage but still left Carol Lena with problems.

"She's a complex patient," said Ms. Davis. "No wonder she gets depressed when she's in the hospital. There she is in such a dependent position, on their [doctors' and nurses'] turf. But at home, the family is in charge."

When home care was mentioned as an alternative to a lengthy hospital stay, Carol Lena's spirits brightened.

After a few weeks of home-care nursing, her health and appetite also improved.

Today, she is happy, always smiling and talking with great animation.

A fifth-grader at Joppatowne Elementary School, she loves to learn, receives good grades and is ahead of her class in reading. She also participates in school plays, and being in a wheelchair doesn't exclude her from gym classes.

She loves to swim and proudly shows off medals she has earned in the Special Olympics.

"I also got medals in wheelchair races, but I like swimming the best," said Carol Lena.

Once on 15 medicines, she now takes only vitamins.

Her home-care nurses have taught family members how to change dressings for her bedsores and how to monitor her health.

And Carol Lena has learned exercises to strengthen her upper body and how to move from the wheelchair to her bed.

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