Ventilator-Assisted Living©

Fall 2003, Vol. 17, No. 3

(continued)

Traveling with Technology-Assisted Children

Tricia Cunningham, RRT, Voorhees Pediatric Facility,
Voorhees, New Jersey

Summer 2003 marked the second season of WAVE (Wonderful Adolescent Ventilator Excursion), a recreational program at the New Jersey shore for adolescents who require ventilator assistance or who have tracheostomies. Our experiences led to suggestions to encourage other technology-assisted children and teens to travel and experience new adventures.

When planning to travel with technology-assisted children, you must identify potential challenges – and medical and social barriers – and develop a plan to overcome each one. Thanks to the Americans with Disabili-ties Act (ADA), accessibility is federally mandated, but it has a broad range of interpretation. Although the ADA has reduced barriers to traveling, it is up to you to ensure that you and your child’s needs will be met while traveling. Research and planning are key.

Medical issues. Consideration of the climate and length of exposure is important for those with temperature instability. The length of an activity should be compatible to the degree of seating tolerance. Activities for those at risk for rapid or unexpected deterioration should be planned so that intervention is feasible.

Airway humidification must be maintained in children and teens with a tracheostomy. Heat moisture exchangers are suitable for short periods, but are ineffective for those relying on a speaking valve to communicate. The potential for airway drying and plugging should be considered and may be addressed with normal saline given via nebulizer or lavage.

If traveling by ground, map the route and locate the hospitals along the way. Have a medical summary on hand, should it be needed at a local hospital or emergency room. The summary should include medical history, current medical problems, surgeries, allergies, medications, and common problems and their usual course of treatment.

Social factors. A basic human need, particularly for adolescents, is to fit in while traveling and discovering the world. The propensity to avoid toileting, meals, fluid intake, medications, and treatments must be addressed to avoid complications. Although care may be modified to accommodate an active schedule, a safe and effective balance is essential.

Transportation. When using public ground transportation, investigate the transport company. Ask about wheelchair tie-down systems. Surprisingly, there are no specific regulations involving these systems, and belt attachments may vary. Question the preparation of the drivers. Have they received special training? Will it be a straight run to the destination site or will there be a transfer?

Buses built after 1990 must be accessible. Greyhound’s website details their customer service for travelers with disabilities – in many cases they will provide an attendant with a free ticket. Trains (www.Amtrak.com) now offer accessible seating, including a transfer seat and wheelchair storage. When traveling by ship, motion sickness medication and reliable wheelchair brakes are a must. A review of the tide charts enables easier boarding and disembarking. For travel by air, advance planning is vital (see “Air Travel and Ventilator Users”).

Hotel. When choosing a hotel, ask to speak with an on-site manager rather than a customer service representative. Bring a tape measure, ask a lot of questions, get answers, and make frequent references to the ADA. You’ll find that this will be a learning experience for both you and hotel personnel.

Ask about the accessibility of parking and loading areas. Where will you be entering and exiting in relation to your accommodations? Are there ramps on every floor? Where are the locations of wheelchair-accessible elevators? Knowing this in advance, and mapping your route upon arrival will facilitate quick and easy transit to and from daily activities.

Newer hotels offer large, roll-in showers with detachable hand-held showerheads to make bathing safe and easy. Only a few of these rooms may be available and reservation clerks may not be aware of them. Shower chairs and stretchers are ideal, but they are also costly, so consider using a less expensive beach or plastic lounge chair. Arrange to have a room with a small refrigerator for storing medication or special foods. Contact the plant operations supervisor of the hotel to arrange for a stairway fire exit chair when staying above the first floor. Inquire about swimming facilities, restaurants, and special seating for shows. Wheelchair seating is usually limited and it may be situated with individual travelers in mind. Traveling in groups may prove disappointing as seating for multiple chairs and caretakers may be scattered.

Power and Backup. Check the user manuals for the power requirements of all equipment including battery chargers, ventilators, monitors, and suction machines. Discuss your needs with the hotel’s electrical specialist to ensure that the collective amperage will not overload the circuit dedicated to the room. Establish the availability of an emergency generator for use in the event of a power outage and make arrangements to gain access to it.

All durable medical equipment should be backed up, even seating, to avoid becoming stranded during vacation. Power strips will most definitely be needed, but extension cords may not be permitted. Long-lasting rechargeable batteries are essential to facilitate outings and in the event of an unplanned power failure. Newer and smaller external battery packs lasting about three hours or more are available. Using an auto adapter power cord can save valuable battery power while driving to your destination.

Photo of young girl in a beach wheelchairMany beaches have short wheelchair-accessible paths extending partly onto the beach. Some beaches provide all-terrain wheelchairs that enable people to move over the sand all the way to the ocean. These chairs can plunge into the ocean and also serve as floatation devices.

Photo of child in beach wheelchair


Supply Lists

Make a detailed list of all equipment and supplies you need to bring. A list for medical supplies should be separate from traditional vacation needs. Items on the medical list should be checked and rechecked. Unlike a forgotten toothbrush, a simple trip to the store won’t suffice if suction catheters run out. Review your care plan from sunrise to sunset, considering everything you will need for all ADLs, treatments, therapies, medications, and luxuries.

While a master list is needed for the entire vacation, a separate daily trip list should be used for each outing. A “go bag” should be easily accessible and contain all emergency equipment. Other essential, but non-emergency, equipment should be carried in a separate bag. For instance, a backup tracheostomy tube, a down-sized trach tube for emergency insertion, trach ties, lubricant, and a syringe for cuff inflation should be kept close at hand.

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