Ventilator-Assisted Living©

Fall 2004, Vol. 18, No. 3

ISSN 1066-534X

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Read selected articles from this issue ...

Vent Kids of Alabama Support Group
Kara Bishop, McCalla, Alabama
Sidebar: "Care of the child with a chronic tracheostomy"

From independent living to a nursing home ... and back?
Mark Boatman, Jamestown, North Dakota
Sidebar: Respiratory care and Duchenne muscular dystrophy

Ventilator Users in the Air: Traveling to Japan
Interview with Adolf Ratzka, Stockholm, Sweden, and Audrey King, Toronto, Canada

Japanese Ventilator Users Network's Successful Symposia
Joan L. Headley, MS, Executive Director, IVUN, Saint Louis, Missouri

New Interfaces: Nasal Pillows

New Equipment


Vent Kids of Alabama Support Group

Kara Bishop, McCalla, Alabama (www.ventkidsofalabama.com)

My son Corey is 3 and he has used a ventilator since birth due to his premature arrival. His lungs had not developed and he had multiple problems. Corey stayed in the hospital for 11½ months before coming home for the first time. We were told (wrongly) he might only live three weeks. Coming home, experiencing normal everyday life and feeling the love of our family only made Corey thrive.

The Vent Kids support group, founded in October 2002 by myself and Marsha Wise, another mother with a child living at home with a ventilator, arose from our desire to be advocates for our children. Our prime goal is to spread awareness that our children are just like other kids and should be treated the same. We encourage families new to ventilator-assisted living to take their children and ventilators to the zoo, beach or favorite park, or to other fun-filled sporting events. In this simple way, we can help them give their children the high quality of life each deserves.

Camping with a ventilatorTo contact other families, we received a list from Children's Hospital of Alabama in Birmingham of every child in their home ventilation program. We provide at least a quarterly newsletter and have support group meetings every few months. We always meet when a new family is going home for the first time and deliver a care package to the family. This is also a good opportunity for everyone to share experiences of how things are done at home. Our time together does not always focus on medical matters; sometimes we can just "be." Our two big events are our Christmas party and our camp.

Approximately 30 children in Alabama live at home with ventilators, with diagnoses ranging from Noonan's syndrome, spina bifida and dwarfism to Lee's syndrome and muscular dystrophy, along with prematurely born children whose lungs never had the proper chance to develop, and a 15-year-old with a high spinal cord injury.

All of the children have tracheostomies, except one who uses a mask only at night. Most of them use the LTV®950 (Pulmonetic Systems, Inc.) because of its size and portability. Some use the LP10 (Puritan Bennett). Many of the families have nursing assistance either paid by their private insurance, Medicaid or Medicaid waiver. Some of the children attend school, accompanied by a nurse. Several of the children are involved in sports activities, from bowling and baseball to cheerleading.

About 90 people attended our first Light the Way Camp this year in July at Children's Harbor in Alex City, Alabama, including 10 families with children (ages 2 to 15 years old) who use ventilators.

The facility offers an accessible swimming pool, lake with beach area, and comfortable air-conditioned cabins that are also wheelchair accessible. We asked for a sponsorship fee of $75 per family. We did not want the families to bear any personal expense to attend the camp. Due to generous donations, all meals were provided for families and volunteers alike. Each family was responsible for the care of their child. We had a respiratory therapist, nurses and an occupational therapist available to help, but care was provided by the parents.

For many families, the weekend at camp served as their first overnight experience – a rare opportunity to relax and enjoy themselves in a supportive atmosphere. Ventilators alarming, suction machines roaring and people laughing were all beautiful sounds.

Volunteer assisting child with art project.Keeping vents secured on strollers, wheelchairs or nearby floats at water's edge and circuits with PEEP valves flung over their shoulders, families enjoyed some well-deserved fun in the sun. But the kids couldn't wait for the boat rides supplied by gracious volunteers. For many of our families, time spent one afternoon with VSA Arts of Alabama artist Bob McKenna and several VSA volunteers was a high note. An organization that introduces children and adults with disabilities to the arts, VSA brought many projects to keep the kids happily and artfully busy as they expressed themselves in a vivid way. With their help, our ventilator-assisted children created a gigantic painting on canvas that was auctioned off at a VSA fundraising event. A special luau ended the weekend on a festive note.

Another child and volunteer working on an art project.Both parents and children attending camp forged strong bonds and lasting friendships. All of our families want to live joyful, meaningful lives and to live them to the fullest – ventilator and all.

“Care of the child with a chronic tracheostomy” by Janet Johnston, RN, CRNP, Scott H. Davis, MD, and James M. Sherman, MD, from the faculty of the Pediatric Pulmonary Centers (PPC) first appeared in the American Journal of Respiratory and Critical Care Medicine, published by the American Thoracic Society in 2000. Recently expanded into an educational program, it is available online: www.thoracic.org/ChildWithTracheostomy.asp

The PPC, funded by the Maternal Child Health Bureau of the Department of Health and Human Services, are interdisciplinary training programs within academic pediatric pulmonary programs (http://mchneighborhood.ichp.edu) to focus on children with chronic pulmonary conditions and their families. For more information and a CD, contact Janet Johnston: jjohnston@peds.uab.edu, 205-939-5499.

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