Free Life on Wheels by Gary Karp Page B

number of portable products that can be installed on a wheelchair. Many more people are familiar with this equipment thanks to the broad public exposure of Christopher Reeve. The machines are equipped with alarm systems that indicate either volume or pressure drops; the sensitivity can be adjusted. Machines even have the ability to simulate a sigh and to recreate the normal pattern of breathing as much as possible. Settings control respiratory rate, humidity, and pressure.
    Assisted breathing settles into a routine part of life for those who rely on it, as this ventilator user notes:
     
    I have had my trach and vent for a couple of years now, and it just seems like it has been part of me for a long time. But I do remember when they took me off of the hospital vent and put me on my personal one that I coughed and choked a lot until they got the vent settings adjusted correctly. When you get used to it, using the vent is no more traumatic than brushing your teeth!
    Successful use of a ventilator depends on good training provided by a respiratory therapist, not only for yourself, but for people who will be assisting you:
     
    When I first got the permanent trach and vent over four years ago, the respiratory therapist and doctors were excellent in training my partner, me, and my personal assistants in trach cleaning, suctioning, vent settings, etc. I was not allowed to go home until both my partner and my [personal assistant] were taught CPR. I must say that the training was excellent.
    The Tracheal Tube
     
    With a ventilator, breathing occurs through a tube inserted through the neck, nose, or mouth. An inflatable cuff tracheostomy tube is often used in the neck to maintain pressure into the opening and prevent respiratory gases from escaping around the outside. The cuff precludes the user from being able to speak, although it can be deflated for periods to allow speech.
    After the acute stage, some people pursue the goal of using a Jackson tracheal tube, which allows speech. The tracheal opening requires greater care to prevent infection and drainage of secretions than when the inflatable cuff is used.
    The acute period in rehab when a cuffed ventilator user is unable to speak is very frustrating for the user and family. Communication options are reduced to smacking the lips or clicking the tongue to get attention. Lip reading, eye blinks, or a spelling board are sometimes tried. You might be afraid of not being heard over the sound of the machine. Experienced rehab nurses are very aware of these issues and will teach various options. They will do their best to be readily available and responsive and to encourage the presence of family to help reduce everyone’s level of anxiety.
    The tracheal tube needs to be changed, depending on the sensitivity of the opening to infection and the amount of secretions. Some people change the tube every two to three weeks, but each person finds a pattern, as does this woman with postpolio syndrome and quadriplegia:
     
    Trach changes depend on what both patient and doctor agree on. I have gone as long as six months without a change. I was checked by myself, doctor, and partner for signs of infection. If cleaning the trach area occurs daily, the tube can be kept in for months. My doctor doesn’t like me to change a lot, due to irritation of the tracheal wall, which could cause bleeding.
    Ventilator users are generally unable to cough up secretions on their own. The respiratory therapist or rehab nurse might use a technique of assisted coughing, in which pressure is placed in an upward motion at the base of the rib cage to release mucus from the deep sacs of the lungs. Suctioning secretions is part of the ventilator experience and is done as often as every eight hours for some people. It is important not to do suctioning more than necessary, since it irritates the trachea and can increase secretions, as well as the risk of infection. A suction machine is usually kept near the bedside, and