By Aaron Reiss
By Angelica Leicht
By Dianna Wray
By Aaron Reiss
By Camilo Smith
By Craig Malisow
By Jeff Balke
By Angelica Leicht
Then she got pregnant.
Darleen and Alex lived with her mom until two years ago, when she and Alex moved in with his daddy. She started community college and began working toward a pharmacy technician degree. She dropped out because she couldn't afford the tuition and the cost of a home health care provider for Alex.
Alex's asthma is so severe that the beginning of an attack for him resembles the final stages for someone with a milder case. She didn't trust a baby-sitter to pay close enough attention to him and give him rescue medicines soon enough. She worried about day care because teachers would be distracted by other students, and he could catch colds from other kids. If Alex gets a cold, he lands back in the hospital.
Plus, when he's very sick, Darleen's the only one that can comfort him, calm him and help him breathe better. She wanted to be there if he needed her.
Darleen plays a large role in keeping Alex healthy: Every day her son leaves the room while she vacuums. She usually steam-cleans the carpets once a week (although her brother's steam-cleaner recently broke). She puts away Alex's stuffed animals and keeps his red plastic chairs and toy trucks out on the balcony since they collect dust, which can trigger an attack. Darleen dusts all the time, and Alex's daddy smokes only outside. (Alex's father didn't want to be identified because as a Toyota dealer, he wants to project an image of success.)
Lately Darleen and Alex have spent their days inside watching talk shows and Disney movies. They're stuck at home since they still don't have wheels and Alex can't stay outside too long. Some days Darleen's bored.
Last month Darleen took a temporary job telemarketing, and she found a baby-sitter for Alex. The woman's son has asthma, so she knows what to watch for. Plus Alex is now old enough to know when he's sick and to ask for his medicine.
Nearly every day Alex tugs on Darleen's hand and says, "Mommy, I need my meds." That's when she puts on the plastic mask and gives him a breathing treatment to open his narrowed airways before they close. He hates getting treatments. Still, if he doesn't need a treatment during the day, Darleen usually gives it to him before bed -- just in case.
Twice a day Alex also takes two puffs of his Flovent inhaler, a steroid to keep down the swelling, and two puffs of Serevent, a bronchodilator, to open his airways. He also takes Zantac for his gastroesophageal reflux, because if the acid from his stomach gets up into his lungs, it could reshape them or corrode his vocal cords. Just like rust filling up a pipe, says his Memorial Hermann Hospital case manager, nurse Christine Lasserre.
If Alex didn't take his cabinet's worth of medicine, his asthma could cause permanent scarring, reshaping and remodeling of his airways. Eventually it could entirely close his lungs.
The costs for keeping Alex's airways open are high. But Darleen has white-coat-wearing guardian angels. If her son is sick in the middle of the night, she has the number to talk directly to a nurse or physician who knows Alex. Memorial Hermann Children's Hospital has a 24-hour-call schedule to eliminate late-night ER visits. Hospital workers give out mattress and pillowcase covers and sometimes medicine, if Alex runs out. They have even given Darleen cab vouchers when she needs a ride. When Darleen's Medicaid stopped, the hospital kept up Alex's immunity-boosting treatments for two months, which cost $1,000 a treatment for medicine alone.
That's cheaper than three weeks in the intensive care unit.
When Alex starts elementary school, he'll face another problem: the schools themselves. Unlike at home, where Alex's mom can constantly monitor the state of her apartment, school environments are uncontrollable. Students carry viruses, carpets carry dust, and the air carries allergens.
Research shows that schools are the best place to identify asthmatics because you don't have to rely on parents making and keeping doctor's appointments. Last year the Houston Independent School District reported that 4,180 students had asthma. Across the country researchers and the ALA have started sending students home with questionnaires on the disease, hoping to find undiagnosed asthmatics.
Researchers with the Partners in Asthma Management project have identified asthmatics in Houston elementary schools and are studying what happens when they receive proper treatment -- and when they don't. A joint effort by the University of Texas-Houston School of Public Health, the Baylor College of Medicine and HISD, the five-year study, funded by the National Institutes of Health, is in its last year of tracking asthma symptoms, absenteeism and grades. The project has brought in physicians such as Stuart Abramson to treat kids at 30 schools while monitoring students at 30 control schools. Since asthma is the number one reason students miss school, program officials want to see if proper medication and care will not only make kids feel better but also help them perform better in the classroom.
As part of the program, the kids tested an asthma-management video game titled Watch, Discover, Think and Act. The CDC-funded game has black and Hispanic characters, and rap music, and can be tailored to each child's asthma triggers and symptoms.