Abstract

Pammy had never been home in her 16 months of life. She'd never been in a car seat, seen her sister go off to school, or sat outside in her stroller. Today was the first day of a new life. While her Dad finished putting the crib together and the respiratory therapist arrived with the missing ventilator connector, her mother and her nurse Judy were accompanying her in the ambulance home. Soon her tube-feeding bag was hanging on a hook next to the "Welcome Home, Pammy" sign that a neighbor had made on his computer, and her four-year-old brother was building a runway under the nurse's feet. The back-up ventilator filled a quarter of the small living room, and the tubing, suction catheters, vent parts, formula, and water bottles filled the closet in Pammy's room--large enough because Mom and Dad had moved out of the master bedroom. Judy had helped Pam's mother set up the room a week ago and already had a sense of her concerns, the four-year-old's busyness, and the irregular schedule that the father worked. This would be an enjoyable, but challenging experience.

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