Ventilator-Assisted Living©

Winter 1998, Vol. 12, No. 4

ISSN 1066-534X

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Read selected articles from this issue ...

An Israeli Experience
Philippe Seguin, Respiratory Nurse

ALS Update: Jim Ballard
Marcy Ballard

A Happy Anniversary
Ismail Tsieprati

When the Power Goes Off
James and Bill Craig

Tales of Survival
Tom Wagner and Philip Fernandes

Speak to Me ... Better
Jeanette D. Hoit, PhD

Traveling with a Child with a Trach
Priscilla Thibault, MD

The Baku Baku Club: Education and Ventilator-Assisted Children in Japan
Yumiko Yoskioka

Saki's Story

An Israeli Experience

Philippe Seguin, Respiratory Nurse, ALYN Children's Hospital, Jerusalem, Israel

Our experience with home ventilation at ALYN Children's Hospital and Rehabilitation Center in Jerusalem started in 1984, when we received our first ventilated patient using a Dräger ventilator. Today ALYN is the only center providing rehabilitation services for ventilator-dependent children up to age 18. Thirty percent of these ventilator users have returned home using partial or total ventilation. Between 1990-1997, forty-five children discharged home with respiratory apparatus included eight with high spinal cord injuries, five with traumatic head injuries, eight with pulmonary-tracheal injuries, and twenty-four with neuromuscular diseases. These children returned to their homes country-wide, including the territories under the Palestinian Authority.

At ALYN, we assess and treat the children as inpatients, usually referred directly from ICUs and already equipped with a home ventilator. The majority of the children have tracheostomies, but several use BiPAP® systems. The main medical funds and insurance companies usually agree to supply the Companion 2800, 2801, or PLV-100. We also care for thirteen children and young adults with muscle diseases who are ventilated, most using LP6, LP10 or EV 800, 801 ventilators. We use the In-Exsufflator Cough Machine often. An additional group of children and young adults are seen regularly as outpatients in a multidisciplinary clinic. The children at home also attend this clinic at least biannually. On each visit, the respiratory nurse conducts a full nursing assessment including respirometry and blood gases. Our unit also cares for the children with respiratory problems who attend a day care center in our hospital. These children are all residents of Jerusalem and the surrounding area, including one spinal cord injured boy (C1-2) who comes from Hebron for rehabilitation and respiratory care.

The care of the child admitted to the hospital is supervised by a specially trained respiratory care nurse. The family is involved as soon as possible in a planned teaching program consisting of up to ten meetings. The program includes general information on the child, his/her problems, needs, special care, and care of equipment. The major costs of the equipment are usually covered by government medical funds or insurance companies (following accidents). The cost is estimated according to the list of equipment requested by the physician and the respiratory nurse.

In recent years, the medical funds have created home care infrastructures, and we keep in contact with the public health nurses who usually come to the hospital before discharge to learn of the child's special needs. They are the ones making the home visits on a daily or weekly schedule depending on demand and services available. Our national insurance allocates a monthly allowance to the family for the support of the child (except for road accident cases). A voluntary organization loans equipment such as suction machines, oximeters, etc., to the families for three months or until they receive their own equipment. There are some volunteer groups in different areas of the country which offer respite care to the family. These helpers also receive special training in the care of the child, and they prove to be of invaluable help to the families who care for their ventilator-dependent child day and night.

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