Ventilator-Assisted Living©

Fall 2005, Vol. 19, No. 3

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Swedish Respiratory Unit for Ventilator-Assisted Children

Alette Bagge, RN, LIVA, Astrid Lindgren Children’s Hospital, Stockholm, Sweden (alette.bagge@karolinska.se)

The improved care of newborn children has resulted in an increase in the number of technology-dependent children who are cared for in hospital. Since 1990, the Department of Pediatric Intensive Care at Astrid Lindgren Children’s Hospital in Stockholm has cared for ventilator-assisted children in a separate long-term intensive care unit (LIVA).

The LIVA unit offers a more home-like and stimulating environment that has a favourable effect on the children’s psychomotor development. Eventually the children are discharged to home or other accommodations.

Three of the four beds are occupied by hospitalized children, and the fourth bed is used for short-term care of children who had previously been on the unit or whose parents need respite.

The home-like atmosphere of the unit has rooms for different activities: bedrooms, playrooms and dining room.

The children leave their bedrooms during the day. Pre-school and school activities take place outside the hospital. Other activities such as walking in the surrounding areas, visits to the Skansen Zoo and Park, and visits to the cinema and theatre are encouraged. The need for ventilatory support should not be an obstacle.

Currently, 47 technology-dependent children are being cared for at home. 85 children have been discharged, and 23 children have been decannulated. Eighteen children have died. Duration of tracheostomy ranges from 2 months to 14 years. Length of stay ranges from one day to seven years. Fifty of the admitted children were less than one year of age.

Diagnoses include neuromuscular disorders, CCHS, upper airway dis-orders, lower airway and pulmonary disorders, craniofacial malformations, and cerebral palsy. The majority of the children (38) use tracheostomy ventilation. Ventilators are the Eole 3 XLS (Saime S.A.) and BiPAP® Synchrony and Harmony® (Respironics, Inc.).

Photo of Bea and her sister at playOur large multidisciplinary team consists of an anesthesiologist, pediatrician, social worker, nurses, physiotherapist, dietitian, ENT specialist, dentist, surgeon, speech, play and occupational therapists, department of technical equipment, and administrative staff. The respiratory dispensary at Danderyd’s Hospital produces custom-made tracheal cannulae.

Bea and her twin sister. Bea was in a car accident and had a neck injury. She lives at home now with her family, two dogs and attendants.

Optimal care is guaranteed by our knowledgeable, responsible staff. Constant training and education in the care of technology-dependent children requiring long-term care occurs on our unit, led by the clinical nurse specialist. This training is also aimed at parents, personal assistants, home care providers and other staff at the local authorities who are responsible for the care of these children. Prior to discharge, contact with the relevant local authorities is intensified.

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