Ask Dina Gonzalez about her son Alejandro’s diagnosis, and she has no specific answer.
The list of health challenges the 10-year-old boy faces, however, numbers at least eight items – seizure disorder, cortical visual impairment, chronic lung disease among them – and managing them is daunting.
“Dealing with the doctors can be hard,” the Lebanon mother said. “A lot of them are good at what they do, but they have tunnel vision for their own specialty, and they don’t take into account all of Alejandro’s conditions and medications.”
Her son uses a wheelchair and requires 24/7 monitoring. Gonzalez says she often feels like a prisoner to his frequent, respiratory-compromising seizures – which require her to give oxygen, stimulation to the chest and rescue breaths.
Worrying about whether insurance will continue to pay for his medical equipment, coordinating all his speech, occupational and physical therapy with specialist appointments and finding time for her older son pose a constant challenge.
Since 2009 when she joined the staff, Murphy has made it her personal mission to take on the complicated cases that other doctors shy away from – children who have severely compromised organ systems, are technologically dependent on breathing or feeding tubes, see multiple specialists and require a high degree of coordinated care.
“These are very medically fragile children who are in and out of the hospital all the time,” said Murphy, who created a similar program at St. Christopher’s Hospital for Children in Philadelphia prior to joining Penn State Pediatrics. “They account for .5% of all children, but they utilize 30% of all health care costs – and most of that is spent in the hospital.”
The number of children requiring complex care is growing as medical interventions have evolved, and they are living longer, she said. The ongoing challenge is how to keep them out of the emergency department and the hospital. A pediatric complex care program is a proven way, Murphy said.
“Families need this kind of care close to home – someone who really knows you,” Murphy said. “We know that hospital readmissions and emergency department visits go down when we are able to manage their care.”
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