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17
October
2013

Home Vent Kids Have a Play Date

For many toddlers, play dates are routine. But if you're a child who has had a tracheostomy and you're on a home ventilator, your social life can be limited.

On a recent Saturday, a group of home vent kids who may not get out much, brought their parents and siblings to the Children's Mercy Community Room for a morning of fun with other children and families facing the same health challenges.

Children's Mercy Social Worker Kelly Stidham organized the first-time event for kids who are in the hospital's Infant Tracheostomy Home Ventilator Program. This program allows infants who are less than two years of age at initial hospitaldischarge, and who require tracheotomy and long-term ventilation, to be transitioned to home for extended care. Kids in the program benefit from being at home instead of in a hospital, but since most are complex medical cases, they get fewer opportunities for social interaction.

"The Home Ventilator Program has been very successful," said Linda Gratny, MD, founder and Director of the program, which started in 2005 with two patients and has grown to more than 135. Many were "micro-preemies" (born before 26 weeks of gestation) who have lung and other organ problems, such as severe cardiac disease.

"In the past, these types of patients who can't be off a ventilator would have to stay in the hospital for however long that might be…it could be years," Dr. Gratny said. "They were too fragile to go home with general kinds of care plans, so we started the Home Vent Program.

Dr. Gratny and the rest of the team, including Charisse Lachica, MD; Winston Manimtim, MD; Hugo Escobar, MD; Addie Begley, APRN, MSN; Sarah Dierking, RN, BSN; Kelly Stidham, LMSW, and Margo Humenczuk, RD, LD, provide comprehensive outpatient care.

"The goal is to integrate the children into their family and allow them to benefit from the nurturing and development that happens in a family environment until they're ready to come off the ventilator and decannulate," (have the trach tube removed), Dr. Gratny said.

Program participation requires total commitment from parents or other caregivers who must be skilled in managing their child's condition. The constant vigilance can cause a strain on caregivers as well, so the opportunity to share experiences with other families in similar situations is beneficial.

"It's a huge challenge for families," Kelly said. "There are a lot of logistics involved."

Danielle Matney of Olathe, mother of two-year-old Addison "Addi," was one of the parents who appreciated the outing.

"I love it," she said. "It's good to know other people's stories, and it's really nice to get out and about."

Addi and her twin brother, Conner, were born at 27½ weeks of gestation on Aug. 30, 2011. Both faced multiple health challenges typical of preemies, but Conner's problems were less severe. Addi endured the added challenge of liver cancer and is in remission, but remains on a ventilator.

"She's quite a fighter, as are most of these kids," Danielle said as she watched Addi and Conner enjoy their play time.

"These are miracle kids, all of them," Dr. Gratny said.

"It's great to see them interacting," said Kelly, who plans to organize more of these play dates in the future, given the successof the first get-together.

gratny

Linda Gratny, MD, founder and Director of the Infant Tracheostomy & Home Ventilator Program, said, "These are miracle kids, all of them."

hat guy

Melvan "Van" Wahrenbrock made a fashion statement with his snappy fedora at the first play date for kids in the Children's Mercy Home Vent program.

Addi with Manimtim
Addi Matney of Olathe, Kan., and Winston Manimtim, MD, enjoy each other's company at the play date.