A smile is worth a thousand hardships for Austin mother of twins | Season of Caring
A smile — even if it's more like a smirk or a grin — is worth more than anything to Phyllis Campos.
The mother of twins, Cody and Casey, has learned as much caring for them during the nearly three decades with her ex-husband. The boys, who were born prematurely in 1995 as a result of a rare prenatal condition, have cerebral palsy and a host of compounding health issues.
Casey now works at H-E-B.
Cody was the worst affected. He had his first brain surgery — during which doctors placed a shunt deep into his brain to drain an abnormal buildup of cerebrospinal fluid — when he was 4 months old. By the time he was 4 years old, he had undergone 11 brain surgeries.
The twins are now 28 years old, but Cody has never spoken. He uses a wheelchair because he is unable to stand independently. He must be “spot bathed” because his 90-pound body cannot be submerged due to his gastrostomy tube — a feeding tube that runs through his belly to bring nutrition directly to his stomach.
Since he is nonverbal, his mother said there are only two indicators of his well-being: whether he is smiling or laughing.
“When he smiles, that means it’s all OK,” Campos, 65, said recently as she sat beside him at the kitchen table in her home near Bee Caves. As she spoke, she cradled Cody's left hand, occasionally moistening his lips with a water-filled dropper to keep his mouth from drying out.
Caring for Cody has been a daily challenge with many ups and downs, especially in recent years as his health has further deteriorated, Campos said. Until she retired last year, she was balancing a job overseeing operations for the Lake Travis-Westlake edition of Community Impact newspaper and scheduling caregivers to tend to Cody.
He was in and out of the hospital for six months, Campos said. When at home, she said she would lay beside Cody through those "long and traumatic" nights to ensure her son was OK, finding only brief respites of sleep. "We didn't know if he was going to live. To be honest, it was very scary."
Recently, Campos feels the smiles and laughter have dwindled because of the state of Cody's teeth.
The Campos could not afford regular dentist visits for Cody throughout the years. Sedation was a must because of his condition, even for routine teeth cleanings. But the cost of sedation is high, and her insurance coverage at the time did not cover the cost, forcing them to forgo regular dental care almost entirely, she said.
Cody's teeth began to decay, sped up in part by the taxing seizure medications he was prescribed. In 2021, he had a procedure to remove eight of his front teeth, which had rotted and appeared to be causing him pain. Though Medicare covered the majority of the procedure's cost, Campos said she had to dip into her savings to pay for the rest.
Now, Cody's remaining back molars are "pretty much black" from decay, she said.
"They cause him pain all the time. I've either got him on Tylenol or ibuprofen. I'm resisting putting him on narcotics for his teeth, but we might have to at some point," she said. "For Cody to be happy, with all of the adversity and health challenges that he has, means everything is OK."
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With the remaining teeth out, Campos hopes her boy will smile more often.
"The paramount goal for all of us in the family is getting Cody to laugh or smile. Even though he doesn't have front teeth, his smile is the best," she said. "If he's happy, everything will be OK."
The Campos family's wishes:
Dental care for Cody (teeth extraction and sedation); dental checkup for Casey; a Hoyer lift for Cody; Uber or Lyft gift cards for Casey to get to and from work; cost for an estate attorney to draw up a will for Phyllis and set up a trust for Cody and Casey; help with $532-a-month vehicle payment; help with rent; help finding caregivers; balls for Cody to play with; gift cards to restaurants, including Lupe’s Tortilla, Las Palomas, Chick-fil-A, and Kerbey Lane Cafe; a weekend away for the family; vet care for their cat, Syd Barrett; haircuts; an adult tricycle for Casey; headphones for Casey and earbuds for Cody; help with diapers through North Shore Supply Co.; help with credit card payments; H-E-B gift cards; gift cards for clothing for Casey and a jacket for Cody; help with lawn service; help with Band Aid School of Music tuition for Casey.
Their wish list is available on Amazon.
Nominated by: Hospice Austin, 4107 Spicewood Springs Road, Austin, TX 78759. 512-342-4700 ext. 4726, hospiceaustin.org.
Its mission: Hospice Austin eases the physical, emotional and spiritual pain of any person in our community facing the final months of a serious illness.
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This article originally appeared on Austin American-Statesman: Season for Caring 2023: How to help the Campos family
