Kingwood mom tackles prosthetics on road to recovery

Katy Hayes of Kingwood is determined to regain the life she had before.
December 12, 2010 9:41:44 AM PST
Some days Katy Hayes doesn't think of herself as disabled until she catches her reflection in a mirror. There the 42-year-old Kingwood mom sees a stark reminder that her arms and legs have been reduced to short stubs. Her eyes sting as she mourns the vibrant, independent woman she had once been and briefly indulges the thought: "It's sad to be me!"

Yet, for the most part, she remains doggedly determined to reclaim the life she had before a raging infection forced the amputation of her limbs shortly after the birth of her third child in February.

In the months since, Katy has often felt frustrated by the slow pace of her improvement, while the medical community sees her progress as bordering on miraculous.

From the outset, doctors never expected Katy to survive after she was diagnosed with a rare Group A Streptococcal disease that can prey on women weakened by pregnancy. Katy gave birth to Arielle on Feb. 10 and remembers feeling sore, but nothing out of the ordinary, until piercing abdominal pains started four days later.

She then learned an invasive disease was devouring her flesh and organs. Two days later doctors removed her decaying uterus and bowels. A week and a half later she developed an even more lethal infection -- purpura fulminans -- that destroyed her arms and legs.

The hardest thing her husband, Al, can recall ever doing was authorizing the amputations while his wife was in a drug-induced coma and unable to speak for herself.

Today Katy does not regret that choice, which allowed her to beat the odds and still be alive.

"I'm thankful that I am able to interact with my family, get hugs and kisses, and continue watching my kids grow up," she said.

She also has proven wrong many prognosticators, people who told her she should expect to be hospitalized for two years, that her wounds might take at least that long to heal and that she should not entertain any thoughts of prosthetics yet.

Six-year-old Jake Hayes peeked out the window. His big sister, Amber, 16, straightened out a "welcome home" banner before lifting Arielle from her crib and rushing into the living room just as someone cried, "They're here!"

After only three months in the hospital, on May 16, their mother came home. She sat cushioned by pillows on the passenger side of the car pulling into the driveway.

"Ahhhh, it's really good to be here," Katy said in a raspy whisper because an air tube was recently removed. "Ohhhh, there's my baby. It's been so long. Do you remember me?"

Arielle was held near her mother's face so Katy could smother her cheeks with kisses. Jake, a first-grader, stood shyly to the side until his father noticed and gave him a hug.

Al then hoisted Katy from the car, as she groaned, and placed her in her wheelchair to take her inside. He then tried to find a comfortable spot for her on the couch or chair that won't irritate four bandaged wounds that still must heal. The Hayes' three mixed-breed dogs barked and wagged their tails, with one jumping up to sniff her as if to reassure itself that Katy really is back.

"They tried to talk me out of going home," she said, but she couldn't wait to be free of that sterile hospital environment.

Nonetheless, she and her family know her journey is far from over as she remains dependent on others to perform the simplest tasks, from grooming herself and changing her colostomy bag to switching the TV channel and eating.

By the end of the summer, Katy was already straining and twisting her body to manipulate cables and springs in a shoulder harness that supports and moves two prosthetic arms attached to her stubs. She received her arms much earlier than her doctors expected because all the open wounds on her body that required intensive daily treatments had healed.

On this day, Aug. 11, Katy's face was drenched in sweat after struggling 45 minutes to raise one of her arms and open the claw. She couldn't find that perfect finesse needed to maneuver it.

"These arms aren't listening to me," she groused, as one arm suddenly dropped and locked in the wrong position.

Her trainer made a small adjustment to the springs as her Al walked into the room with a Hershey bar.

She was so hungry that she amazed everyone there by using her claw to grip a chocolate square that her husband offered her and delicately put it in her mouth. It was the first time she had successfully fed herself.

Her trainer then placed a pen in her claw and she managed to scrawl a kindergarten-like representation of her signature on a pad.

At the end of October, she went to the Institute for Rehabilitation and Research in Houston where she spent three weeks learning to pick up dominoes to perfect her fine motor skills.

She also learned how to use her first set of prosthetic legs there.

"I was so tired of just laying around. I couldn't wait to strap them on and go. I never knew it would be so hard," she said, recalling how she once fell and was unable to get up.

Yet she amazed her trainers by balancing on her stubby new legs the first time. "They told me nobody does that, but I did," she said.

By the end of her stay, she was able to walk unassisted -- scuffing her feet along the floor while leaning on a walker -- for 360 feet. "It's like going to the corner," she said.

She also is learning to navigate with her motorized wheelchair, although she sometimes still scrapes the walls like a bumper car.

Meanwhile, the Hayes family has moved into a one-story, four-bedroom home in the Woodland Hills area of Kingwood that is handicap-accessible, and a van equipped with a wheelchair lift should be delivered soon. A trust fund established from multiple fundraisers held everywhere from an Aeros hockey game to the Houston Museum of Natural Science has covered the expenses.

Yet Katy knows she has a long road ahead. Whenever she uses her mechanical arm to eat, she still slings more food onto the floor than she gets into her mouth. She's unable to use a cup to drink yet. But she recently managed to put away the clean silverware, and delighted her son, Jake, by bouncing on his trampoline.

Katy has an attendant who helps cares for her and Arielle during the day until her husband and teenage daughter can take over.

It's a big job for Amber, who spends every day after school chasing Arielle, feeding everyone, changing colostomy bags and diapers, whatever is needed until Al gets home from teaching music about 7 p.m. Then she does her homework from 8 p.m. to midnight.

Although she'd liked to have joined some after-school clubs, the junior said she knew that wasn't possible and keep up her grades.

"It's a lot of work," said Amber, "but I'd rather have my mom here when I need to talk to her about girl stuff."

As soon as Al walks in the door, he's also bombarded by a crying baby, Jake needing help with homework, or his wife needing to be lifted to her chair. The next CD that his band, Soulshine, makes will be called "No Such Thing as a Day Off," he quipped.

"This is our new normal. It's not been easy, but it's a lot better than anybody anticipated," he said. "Our improvements seem to come at the pace of a glacier. But when we look back, we see we've accomplished a lot."


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