Ventilator-Assisted Living©

Fall 2000, Vol. 14, No. 3

ISSN 1066-534X

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Read selected articles from this issue ...

UnMASKING the Issue: A Subjective Review of Seven Masks/Headgear
Audrey J. King, MA

ALS Pulmonary Protocol
Ed White, Texas

Australian Paediatric Ventilator Program
Margarette Somerville, RN, RSCN, Brisbane, Queensland, Australia

Tracheostomy or Noninvasive Ventilation?
E.A. Oppenheimer, MD, California

Brief Explanation of Tracheostomy

Cuffed or Uncuffed Tracheostomy Tubes in ALS
Wayne Phillips

Skydiving Quad
Ola Grind Hermo, Roros, Norway

ALS Pulmonary Protocol

Ed White, Texas

In my opinion, it is important to introduce noninvasive mask ventilation when one's forced vital capacity (FVC) approaches 75%. This provides enough time for one to become familiar with the equipment and respiratory care. It took me about 90 days to get the equipment lined up and to find the masks that fit my needs. During this time my FVC dropped precipitously, and, in retrospect, I had waited too long to begin this process. The individual with ALS must stay ahead of the curve, and it is vital to be early rather than late. The road from neurology to pulmonology can be difficult to navigate; the transition from neurological care to pulmonary care can be complicated.

I currently use nasal ventilation with a volume ventilator (PLV®-100) and the BiPAP® S/TD-30. Both are from Respironics. For daytime use, I have combined the volume ventilator and BiPAP unit into a single integrated system utilizing one-way valves and modifications to all the masks to take advantage of the ventilator's exhaust system for both pieces of equipment. This enables easily switching from the volume ventilator to BiPAP with the flick of two switches.

I believe that the volume ventilator and BiPAP unit each has unique advantages and that certain synergistic effects occur when both are used. The ventilator provides better respiratory support and lung expansion than BiPAP so I use it primarily during the day with some intermittent BiPAP use. However, I find BiPAP more comfortable at night and more sensitive as my breathing becomes more shallow.

Current settings for the PLV®-100: tidal volume of 1.25 liters, inspiratory pressure of 20-22 cm of H2O. (In my case, I seem to like a lot of pressure.) I have used Respironics' Monarch™ mask for about four years, and when I switch to BiPAP during the day, I continue to use it.

Current settings for BiPAP: tidal volume of about 1.2 liters, inspiratory pressure about 20 cm H2O, expiratory pressure 3-4 cm H2O, and breaths per minute about 10. I use nasal pillows with the BiPAP unit during the night, plus an in-line humidifier.

I have a pulse oximeter to monitor O2 saturation levels and pulse rate and a capnometer to spot check CO2 levels. At times an arterial blood gas test is needed for more precise measurement. With either analysis I find I am probably somewhat over-ventilated and experience some hypocapnea with low CO2 levels in the range of 30-32%.

For breathing on my own and to assist in coughing, I reconfigured an Ambu bag ( with an 18-inch tube and mouthpiece. Compressions on the Ambu bag result in air stacking which enables the lungs to expand and is a valuable aid for coughing. Occasionally I need more coughing assistance, and then I use the In-Exsufflator cough machine ( It takes some time to become familiar with the In-Exsufflator, but it can be invaluable during respiratory infections.

When traveling, I use Respironics' BiPAP® Duet® unit which is marketed as a CPAP unit. This unit is very light and compact, but it provides the inspiratory pressure I require and can easily be adapted to a vehicle's power source.

Following this protocol allows me to monitor my respiratory status to gain a clear picture about my condition and any trends that might be developing. I urge others with ALS to start early to improve the quality of their lives. Early intervention helps one to evaluate future respiratory options, such as a tracheostomy, and is critical in avoiding a crisis situation. Pre-planning makes me more comfortable about the possibility of moving to a trach.

I am now in my eighth year with ALS, half of that time spent using nasal ventilation. I have not had any respiratory infections for over five years. I attribute this to my pulmonary protocol, attention to detail, and an aggressive program of vitamins and supplements which have greatly improved my immune system.

It is somewhat oxymoronic, but in many ways I have never been healthier than with ALS.

Cuffed Or Uncuffed Tracheostomy Tubes in ALS

Wayne Phillips

I have used both cuffed and uncuffed trach tubes, but found that the cuffed trach caused me to produce more secretions, even when the cuff was deflated during the day. I needed suctioning about every 15 minutes except when asleep. With the uncuffed trach, I only need suctioning a couple of times in the morning, sometimes not at all.

However, an uncuffed trach has its own problems. At night I would wake up disoriented and with a headache, signs of underventilation. I was losing air out my nose while I slept, which a cuffed trach prevents. The solution was to wear swimmer's nose plugs at night. I wear gauze pads on the nose plugs to prevent pressure sores, and my nurse rubs A & D ointment into my nose each morning. Sometimes the plugs move during the night and I have to have someone adjust them. A warning to anyone who uses Robinal to reduce secretions: be aware that it may dry out the intestines as well and may cause constipation.

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