Ventilator-Assisted Living©

Summer 1999, Vol. 13, No. 2

ISSN 1066-534X

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Read selected articles from this issue ...

A Family Home, Not a Nursing Home
Kristin Hilfiker

Orlando Report: 7th International Conference, "Noninvasive Ventilation: Across the Spectrum from Critical Care to Home Care"
Judith R. Fischer

Nevada's Attendant Care Problems
Paula Howaniec

Adolf Ratzka Honored

The Choice of Interface: Can It Make a Difference?
Susan Sortor Léger, RRT

Noninvasive Positive Pressure Ventilation (NPPV) for People with COPD:
A New Group of Ventilator Users

Muscular Dystrophy publications

New Equipment and Masks

Potpourri: Gary McPherson's Frog Breathing video (www.garymcpherson.com);
The Iron Lung Virtual Museum (http://www.geocities.com/ironlungmuseum)


A Family Home, Not a Nursing Home

Kristin Hilfiker

At publication, the Hilfikers had recently returned from Los Angeles where Molly started phrenic nerve pacing. She is now up to two hours per day with the pacers and is gradually becoming more accustomed to being without her ventilator.

As a foster mother to three children with trachs, two of whom use ventilators, I know we must sound like we live in a nursing home, but it is a real home and a real family. We live in Portland, Oregon, and go camping and swimming and enjoy life. Tracy is almost 17 years old; he has muscular dystrophy; it was his decision to have a trach. Molly Ruth is almost 7 and has CCHS. She is a walking dynamo.

Tracy desaturates at night sometimes and says he doesn't breathe as well lying in bed, especially if he has a cold. He is suctioned as needed every two to six hours. Molly only needs suctioning twice a day. We change the trachs every two weeks, using Bivonas which can be sterilized and reused. Molly can do her own trach changes and thinks it is funny to take it out, leave it hooked to her ventilator, and go out to play.

I am also a pediatric and NICU nurse so I understand both home care and hospital care. For help in the home, I am allowed (by the state of Oregon) a certain number of hours of nursing care per day for each child who qualifies as medically fragile, but the agencies are expensive so there is less nursing for the dollar. (I now am allowed 12 hours per day which I can save and use in case I need extra hours.) I have found that many of the nurses I hired did not have the skills or the philosophy to care for these children. One nurse slept so soundly one night that Molly got up, took out her trach, made her ventilator alarm, and had me take care of everything before the nurse even woke up.

Currently, I use nurses and aides I hire myself and train to do things exactly my way. When I am not at home, I have nurses. When I am at home, I use aides, often my other children or young adults in nursing school whom I have known for years. I have lists of parameters that they must meet. I have an aide on duty and awake during the night. If the children are sick, I have two aides on duty. What I really have done is absorb the aides into the family.

Sometimes I think that the people who care for our children do not realize that what seem like extraordinary measures are really comforting bedtime rituals. Our bedtime ritual is Mommy doing the ETCO2, blood pressure, medications, suctioning, taping on the oximeter, having milk, and reading a Bible story. We do that at home and when we are in the hospital.

For the times when Molly must go to the hospital, I put together a book about Molly's care: what I do and what the other caregivers do. I explain it all to the hospital's pediatric ICU staff. On admission, I explain that our goal is to return home as soon as possible, but while we are in the hospital we want to make it seem like being home. I try not to step on toes, but I am Molly's only advocate. I feel strongly about parents caring for their children. It takes a team and, as parents, we are the team leaders – everyone else is there to support us.

A power outage last year forced us to become better prepared, and we have a generator and two backup marine batteries. I also bought an inverter that plugs into the car's cigarette lighter with an extension cord that I can use with the ventilator until the generator gets going. Our power company does not have a priority list for medical emergencies so we are on our own.

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