In tough times, an ill child makes coping extra hard

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EAST BRADY, Pa. -- Few things in life are more stressful than a seriously ill child. Just ask Scott and Jessica Day, whose 2-year-old son, Scott Jr., was diagnosed in utero with hypoplastic left heart syndrome, a rare congenital defect in which the left side of the heart never fully develops.Though the condition is often fatal within the first two weeks of life, the Days were optimistic their son would somehow beat the odds. So far he has, surviving three successive aortic surgeries, infections, seizures, a stroke, fevers, colds and countless one-hour car rides from home to Children's Hospital of Pittsburgh."You get to a point where you simply have to lean on your faith," Jessica Day said.If caring for a chronically sick child has strained the couple's emotions almost to the breaking point, so has the escalating cost of food and energy. Each 120-mile round trip to the hospital, for example, costs them at least $50 out of pocket for gas and parking -- and Scott has been hospitalized more than 100 days since his birth. While Jessica Day is a master of penny-pinching, the $300 she sets aside each month for groceries doesn't buy nearly as much as it used to. A gallon of milk, for instance, recently topped $4.If she were also working, Day noted, they'd probably muddle through these tough times with some creative budgeting. But she had to quit her job as a certified nursing aide to stay home with 5-year-old Maggie and Scott, whose heart rate and blood oxygen levels must be carefully monitored.Unlike some in their situation, Scott Day has a good job as a certified nursing aide at a government-run nursing home. But the $31,000 he takes home each year barely meets everyday expenses, let alone the ancillary costs of Scott's illness -- especially when factoring in all the unpaid vacation and personal days he's had to take to be at the hospital. The $800 they managed to save before his birth, he notes, was gone in a flash."And we're above the level where we're eligible for any assistance," said Jessica Day, sighing. The only saving grace is that the couple have excellent health insurance. Scott's medical bills, with the last surgery, have topped $2 million.Neighbors and friends have been generous in passing the hat for incidentals, and many also have given them gas cards and McDonald's Arch cards to defray the cost of their trips. Their church, Cabot United Methodist Church, helped them catch up on the overdue car payments and regularly fills their refrigerator and pantry."When we hear about a need, we try to help in any way we can," said the Rev. Randall Forester, the church's pastor.In addition, Scott Day now sells the eggs a small brood of hens lays each day on their 13-acre property, along with scrap metal he gathers here and there in his beat-up pickup truck.Only time will tell if Scott will suffer developmental problems related to his stroke, but small children typically have a better ability to heal, said his doctor, Dr. Victor Morell. And the early signs are good: Though he tires easily and often gets dehydrated, he laughs and chats and scampers around like any other 2-year-old. If you didn't catch a glimpse of the ragged scar that stretches from just above the belly button to the sternum, you wouldn't even guess he was sick.(E-mail Gretchen McKay at gmckay(at)post-gazette.com.)(Distributed by Scripps Howard News Service, www.scrippsnews.com.)