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Griswold - Audrey Pavlak, 17 months old and wearing a purple cotton dress, pushes a hot pink toy car in her living room, intermittently plopping on her backside or planting a kiss on her Mom's cheek. Her dress covers the tubes connected to her heart and stomach. Her playfulness masks her traumatic experiences - multiple surgeries, long hospital stays and frantic emergency room visits in connection with a rare and potentially fatal condition called short bowel syndrome.
Her mother, Brianna, 30, engages in typical mother activities - hugs, kisses, fetching a pacifier, offering favorite toys. Then, she grabs a small black kit, pulls out a needle, and pricks Audrey's heel to test her blood sugar. Audrey smiles through it. A few minutes later, Brianna drops liquid sugar into Audrey's mouth to raise her low sugar level.
Audrey needs round-the-clock care for medications, feeding done mainly by tubes, frequent diaper changes, various tests, and maintenance of tubes. Brianna does it all, saying she never really sleeps, just naps. Her husband, Andrew, a National Guard veteran, needs her help, too. He suffers from brain injury, Post Traumatic Stress Disorder, depression, back problems and hearing loss as a result of a Humvee rollover accident in Afghanistan.
When Audrey was released from the hospital the first time, doctors wrote orders for 40 to 60 hours of nursing care a week, Brianna said. But TRICARE, the military's insurance plan, won't cover that. A nurse visits weekly to change the dressing on a central intravenous line that is prone to serious infection. Brianna has appealed the denial to no avail. The Pavlaks are not eligible for TRICARE's extended health care option because Andrew is medically retired and not on active duty, Brianna said.
"He doesn't have a choice to be active duty anymore," she said.
She said she can't afford to hire a nurse or to buy supplemental insurance. Andrew's brain injuries make him unemployable. Brianna quit her job at the Coast Guard day care center in New London to take care of Audrey. Their income is derived from Andrew's VA disability benefits and Social Security, and a VA stipend Brianna gets as Andrew's caretaker. It puts them over the $36,130 annual income limit for a family of three for the state's free HUSKY health insurance for children.
"So we're basically stuck between a rock and a hard place," Brianna said.
She has sought help and advice from state programs and is scheduled to meet with a staff member of U.S. Rep Joe Courtney, D-2nd District. She applied for a Medi caid waiver and is number 485 on a wait list, which, she was told, could take six to 10 years. Audrey's doctors have written letters to TRICARE on her behalf.
Meanwhile, Brianna said, "I had to learn to do everything."
Audrey's room is painted deep purple and white, with purple letters spelling "Audrey" on the wall behind her dark wood crib. In the closet with the baby clothes are 15 stacked and labeled plastic bins filled with medical supplies. A small refrigerator sits next to the crib for medications that need to be chilled. She uses as many as 30 diapers in a day at a cost of $178 a month.
"I run a small clinic here," Brianna said.
The hope is that Audrey's intestinal and bowel problems won't require liver and intestinal transplants. The central line that provides nourishment to keep her alive is prone to infection, which could be fatal. If her temperature rises above 100.8, she has to be admitted to the hospital to be monitored, so Brianna keeps a suitcase packed. Audrey takes a blood thinner because clots have developed at two access points for the line. She receives supplemental nutrition through a tube inserted through the abdomen. Orally, she takes up to an ounce of an amino acid-based, nondairy, sugar-free formula, and a half ounce of Pedialyte. She needs to learn to chew. She goes to physical, speech and occupational therapy as well as frequent checkups and tests.
"I lost count of hospital stays," Brianna said.
At the same time, Audrey is a happy baby. She started walking last month and babbles like a baby on the verge of talking. Andrew's mother helps daily after working on her feet all day in a full-time job. His aunt moved nearby and pitches in. His brother drives him to some medical appointments. Brianna can no longer accompany him to the VA in West Haven, which had been a priority for her so she could be his advocate. Andrew can play with Audrey and change her, but his brain injuries limit how much help he can give.
"It's not fair," Brianna said of their insurance denials. "Andrew, being a veteran medically discharged, being told no, it's a slap in the face. You serve your country and no one wants to help when you really, really need the help."