Ana Cobos-Tennefoss’s was born in 1995 with cerebral palsy, reflux and seizure disorder.
“Ana is my angel,” says her mother, Rosaura Cobos-Tennefoss. But she acknowledges that caring for a special needs-child brings a lot of pressure. As her sole caregiver for more than 10 years, Rosaura fed, bathed and played with Ana, who could not communicate or move on her own. She exercised Ana’s limbs to ease her spastic muscles, and she comforted Ana when she cried. At night, Rose watched over Ana while her husband slept so that he could work to support the family.
As their family grew, Rose became anemic and depressed. She also developed back problems from carrying and repositioning her daughter. Rose turned to the Christiana Care Visiting Nurse Association in 2005, when Ana’s medical needs intensified.
“Ana cannot communicate or care for herself,” says Karen Sapp, LPN, one of several specially trained VNA private-duty nurses who care for Ana eight hours a day, seven nights a week. “She is 100 percent dependent on others for her well being,”
Debilitating muscle spasms from cerebral palsy cause Ana constant pain. A poor swallow reflex places her at risk for aspirating food and liquids and prevents proper nutrition. Constant repositioning is required to prevent skin breakdown and pressure ulcers.
Each night, VNA’s experienced nurses assess Ana’s neurological response, breathing and vital signs. While she sleeps, they administer medication, provide suction to maintain her airway, oversee nighttime feedings and monitor her baclofen pump, which provides medication to reduce muscle spasticity. In the morning, nurses manage Ana’s personal care and perform range-of-motion exercises to help maintain flexibility in her extremities.
“What makes Ana unique is her ability to adjust to her limitations and yet remain so sweet. You can’t help but love her,” adds Karen.
Today Ana is nearly 15 years old. With VNA’s help, she is able to live at home in a loving environment and meet many health-related goals. Her seizure activity has stabilized and remains well-controlled. Continuous overnight nutrition enables Ana to gain and maintain weight. She attends school five days a week, including physical and occupational therapy. In her free time, Ana enjoys shopping with her mother and brother.
Life has improved for Rose, as well. With a quality night’s sleep, she has energy to provide for Ana’s daytime needs and to help her son with school work.
“VNA was an answer to a prayer. Night nursing helps Ana, and makes me a better wife and mother,” Rose says.