An ill child makes coping extra hard



SQUEEZED: One in an occasional series on the pinch of a souring economy and rising prices
Monday, September 22, 2008
By Gretchen McKay, Pittsburgh Post-Gazette
Darrell Sapp/Post-Gazette
Jessica and Scott Day sit with their chronically ill son, Scott Jr., at their East Brady, Armstrong County, home.

EAST BRADY, Pa. -- Few things in life are more stressful than a seriously ill child. Just ask Scott and Jessica Day, whose 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, and 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," said Mrs. Day.

If caring for a chronically sick child has strained the Armstrong County 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 in Oakland, 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 21/2 years ago. While Mrs. 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, Mrs. Day noted, they'd probably muddle through these tough times with some creative budgeting. Instead, 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, Mr. Day has a good job as a certified nursing aide at Sunnyview Home, a government-run nursing home in Butler County. 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 Mrs. Day, sighing. The only saving grace is that the couple have excellent health insurance through the county, as Scott's medical bills, with the last surgery, have topped $2 million.

Moving from an apartment in Saxonburg to a manufactured home on 13 acres in a rural area a year ago helped cut expenses. But they've still had to skimp in recent months on some very basic needs: both their phone and electric have been disconnected (a loan from Mrs. Day's grandmother got it turned back on) and they've also fallen behind on car payments and insurance. As a result, Mr. Day says, they've had to learn to live off of others' good graces.

Neighbors and friends have been more than 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 to Children's. Their church, Cabot United Methodist Church, helped them catch up on the overdue car payments and regularly fills their refrigerator and pantry; tomorrow, St. Paul's Community Church on state Route 268 in Chicora will sponsor a spaghetti dinner from 4 to 6:30 p.m. to help raise money for a fund set up in Scott's name at a local bank.

"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, Mr. 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.

Yet for every step forward, there's often a step back. Mr. Day had to take even more time off work to battle appendicitis followed by double pneumonia while Mrs. Day underwent gall bladder surgery. Then there are little things like shopping for school clothes and supplies for Maggie, tractor repairs and a recent accident with their dog that cost more than $100 in vet fees.

"It's a never-ending battle," said Mrs. Day. "I'm glad we have a house and a car because our credit is destroyed."

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.

"It's pretty good right now," said Mrs. Day.

That said, Scott will need lifelong follow-up care with a cardiologist. The surgical techniques that saved his life have only been in practice for about 20 years, so to date, there are no long-term studies on mortality.

"It's uncertain," said Dr. Morell. "Some kids who go through the surgeries need a transplant at five [years], and then there are kids 10 years out who are doing very well. You just don't know."

St. Paul's Community Church, 2167 State Route 268, Chicora, Pa., 16025, will sponsor a spaghetti dinner from 4 to 6:30 p.m. tomorrow for Scott Day. Suggested donations are $6 for adults, $3 for children. Takeout available. Call 724-445-3834.

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