Ventilator-Assisted Living©

Winter 2000, Vol. 14, No. 4

ISSN 1066-534X

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Read selected articles from this issue ...

Research Grant to Examine Ventilator Users' Quality of Life

Improving Quality of Life
Traci Lindesmith, RRT, CPFT

Home Mechanical Ventilation in Finland
Ritva Pirttimaa-Kaitanen

What Is Fiberoptic Intubation?
Selma Harrison Calmes, MD

Respiratory Supplies Shopping List
More from Millennium Man Bill Miller, Florida

Respironics Responds

Dr. Colin Sullivan Honored by ACCP

New Equipment and Interfaces

HMV Workshop

2001 Home Mechanical Ventilation Conference


Improving Quality of Life

Traci Lindesmith, RRT, CPFT

The Pulmonary Clinic at Children's Texas Medical Center of Dallas is designed to manage the unique pulmonary problems associated with neuromuscular disease in pediatric patients ranging from newborns to 18-year-olds.

Since opening in October of 1996, the clinic has treated more than 450 children, most of whom are seen at least once annually. The majority of the diagnoses includes spinal muscular atrophy, muscular dystrophy, spina bifida, Charcot-Marie-Tooth disease, and myasthenia gravis.

In the early stages of neuromuscular disease, especially when the children are still ambulatory, the focus is placed on patient education. Since pulmonary clearance becomes more difficult as infection progresses, the staff teaches the children and parents how to recognize the early signs and symptoms of upper respiratory infections.

The respiratory therapist works with families to help them prevent and treat pulmonary infections by using techniques such as assisted coughing, chest physical therapy, and the use of pulmonary clearance equipment, which may hasten the recovery time during a respiratory infection.

When lung restriction becomes more advanced due to muscle weakness, the therapist teaches each child to perform chest wall mobility exercises with an Ambu®bag (www.ambuusa.com).

The In-Exsufflator cough machine (www.jhemerson.com) is used to assist children with cough weakness and pulmonary clearance. On a few occasions, the In-Exsufflator has been used on children in the ICU who are suffering from mucus plugging and lung collapse.

Many of the children have nocturnal hypoventilation and require ventilatory support. Our ventilatory method of choice is non-invasive bi-level pressure support using a nasal mask. A few of the children require full-time ventilation and tracheostomies.

A big challenge for the staff at Children's is trying to fit the smaller children with the correct size nasal masks. Custom masks and headgear are often designed for them. The key for us has been keeping a large stock of various sizes and styles of masks available. Each child is unique, and adequate time should be spent identifying what works best for each one. If a child wears the mask for more than 8-10 hours a day, we usually see some problem with skin breakdown. In those cases, we often give them a soft traditional style nasal mask as well as a low profile style so they can alternate them.

The clinic operates every Thursday afternoon. Patients are seen by clinic director Peter Luckett, MD, and Peter Schochet, MD, pediatric pulmonologists and members of the faculty of the Department of Pediatrics at the University of Texas Southwestern Medical Center. The clinic team also includes a nurse, a respiratory therapist, and a pulmonary function technologist. Patients receive a complete pulmonary evaluation (spirometry, lung volume, MIP, MEP, peak cough flow, O2 saturation, and ETCO2 measurements, sometimes ABGs, always chest X-rays) with each visit.

The clinic also works closely with case managers, social workers, and home medical equipment companies so that the children are provided with the appropriate medical equipment at home. Our case management department makes all home medical arrangements as well as discharge planning, but we often help write letters of support for equipment.

Dr. Luckett, also the medical director for the Respiratory Care Department, says, “Caring for this group of patients was new to us when we started four years ago and it has been very satisfying. They have taught us a lot, and we believe our team approach has improved the quality of their lives.”

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