Corey Leibowitz and Anna Marczyk don’t know each other, but they share a lifeline: CHOP Home Care.
When Corey wants to know why the portable ventilator her son Spencer uses is making a funny noise, she calls John Tamasitis, Home Care’s manager of respiratory therapy. If she has a question about the pulse oximeter, Home Care patient access coordinator Cheryl Henderson is a speed-dial call away with answers and advice. Spencer’s feeding pump went on the fritz one night, and an hour after a call to Home Care, there was a knock on the Leibowitzes’ door: Home Care delivery had arrived with a new one.
Before Anna took her daughter Faith on a road trip where the family car would be going in a tunnel, she called her Home Care coordinator, Cindi Dipette. Good thing, too. Anna found out Faith needed a different type of oxygen tank for a tunnel. One night when the nasal cannula that delivers oxygen to Faith’s nose ripped, Anna called Home Care. “They kept me on the phone and talked me through how to make it work,” she says. “We figured it out, and now they make sure I always have extras.”
CHOP Home Care delivers medication, oxygen, medical equipment, hospital beds, wheelchairs and a huge range of other medical supplies — everything from gauze and ostomy supplies to ventilator tubing and liquid nourishment.
It also delivers something just as important: peace of mind. “Everyone at Home Care has been great in easing our fears,” says Anna. “They know so much about everything, it makes us comfortable caring for Faith at home.”
Faith, now 1, was born in the Garbose Family Special Delivery Unit at CHOP because of a prenatally diagnosed heart defect. “We immediately picked CHOP,” Anna says, “because we knew it was best in cardiac care.” Anna’s obstetrician referred her to the Center for Fetal Diagnosis and Treatment. “The moment the nurse called me, I felt like CHOP opened its arms and put them around me,” says Anna. Faith, who also has Down syndrome, stayed in the Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit for nine days before going home with a nasogastric (NG) tube, which goes from the nose to the stomach to deliver formula. That began the Marczyk family’s relationship with Home Care, which supplied the tubing, pump and special formula.
When Faith was 3½ months old, she had surgery to repair her complete atrioventricular canal defect. At discharge, she was kept on oxygen to prevent pulmonary hypertension, and Home Care was there to make sure the family’s home was set up properly. And they’ve been coming every two weeks since, bringing fresh oxygen tanks and other supplies.
The Leibowitzes have been relying on CHOP Home Care for 13 years, ever since Spencer first came home from Children’s Hospital when he was 1½ months old with a gastrostomy tube (g-tube), oxygen and an apnea monitor. Spencer has a rare form of muscular dystrophy, X-linked myotubular myopathy, which results in overall muscle weakness. When he was 18 months old, he was hospitalized with the flu and experienced an emergency. To save him, doctors performed a tracheostomy, and he has been on a ventilator ever since. Spencer isn’t able to eat by mouth and receives his nourishment directly into his stomach via the g-tube. Because of muscle weakness, he uses a motorized wheelchair to get around.
“Before we were allowed to bring Spencer home on the vent, we had to learn a whole binder full of information,” Corey says. In the Family Learning Center at the Connelly Resource Center for Families and at the bedside, Corey and Bruce, Spencer’s dad, learned how to take the ventilator apart and put it back together again, how to suction, change the tubing and do tracheostomy care, care for the stoma (opening in the neck/windpipe), use the heat moisture exchanger, and troubleshoot potential problems.
“When we brought Spencer home, John came over,” Corey says. “He told us, ‘You set it up’ to make sure we knew the equipment inside and out.” Spencer has two ventilators, one in his bedroom for overnight and a portable one. Over the years, Spencer’s equipment list has grown to include a nebulizer, CO2 monitor and “coughalator” (a cough assist device to help clear mucus).“Any time we have an issue, whether it’s equipment-related or not, we call Home Care,” Corey says. “People there have known us for a long time. They’re invested in us and invested in our son. They take care of us.”
CHOP Home Care fast facts
CHOP Home Care makes it possible for families to care for a child with a complex medical condition that requires equipment and supplies at home. Home Care:
- Has 82 employees including nurses, access coordinators, dietitians, pharmacists, drivers, respiratory therapists, schedulers equipment repairmen, insurance specialists and others
- Serves an average of 1,700 patients a year
- Makes 39,700 supply deliveries a year
- Maintains the operation of approximately 50 ventilators at any one time
- Fills 43,600 prescriptions a year
- Makes 11,000 home visits a year