GETTING OFF THE VENTILATOR

Regardless of level, in the beginning it may be difficult to breathe because the muscles that are responsible for breathing and coughing may not function or only partially function. It is not uncommon to be intubated or undergo a tracheostomy, so breathing with the help of a ventilator is possible.

The degree of respiratory dysfunction is related to the extent and level of injury. If you need help breathing following your injury, a tube is either inserted through the mouth, into the airway (intubation) or directly into the airway via a hole created in the neck for access to the windpipe (a tracheostomy). The tubes are connected to a ventilator providing oxygen.

The goal is only to use the ventilator for as long as you need it. Your doctors will want to wean you off of it as soon as possible, although with the highest of injuries it may be immediately evident that weaning is not possible.

Sometimes the ventilator can be discontinued after the first assessment; other times it can take several attempts while you slowly develop the strength to breathe on your own for longer periods of time. Individuals with respiratory failure who cannot be weaned from the ventilator within a week are candidates for a tracheostomy.

Getting a Tracheostomy

The doctor puts a tube through a stoma (hole) made by a small incision at the throat. A paper collar may be draped around your neck to help keep the tube in place and catch secretions. A little piece of tube sticks straight out of the neck.

The trachea tube may be the best way to get oxygen into your lungs, and it's more comfortable than insertion through the mouth. It can also be used to clean out secretions. A catheter is inserted and used with a suction machine by a respiratory therapist, or later, by a caregiver.

Some quadriplegics develop a relatively unexplained production of excessive and persistent mucus. It may be from bronchial spasms and is also related to ventilator use, which can cause secretion retention. These factors can predispose us to pneumonia. The suction machine and tracheostomy provide the best method to expel mucus. After the acute days, the problem should be reduced.

The tracheostomy usually makes it difficult to speak, too. Speech is generated when air passes over the vocal cords at the back of the throat. With a tracheostomy, it passes through the tube instead. A trachea tube does not prevent eating. Your physicians may have you on a feeding tube during initial assessment however.

A pulmonologist will determine when it's safe to try weaning off the ventilator. Don't be afraid to try!

Weaning off the Ventilator

Sometimes quadriplegics may use a diaphragm pacing system with prolonged ventilator use. Electrodes are attached to the diaphragm and connected to an external stimulator which causes your diaphragm to contract so that air is pulled into your lungs. Diaphragm pacing can help improve your breathing and potentially stop your dependence on a mechanical ventilator.

It took Elena (C 2-3) two years to get off the ventilator after her injury. "Doctors told me it wasn't possible, of course, because of my level of injury." Elena insisted on trying with therapy until she could do it. "I used it a few times since, just when I had bad colds." For that reason it may be advisable to keep the trachea stoma open. This also allows for deep suctioning to clear phlegm. Talk with your pulmonologist because every injury is different.

I had been on a ventilator for about a week via intubation when the doctor explained that my chances would be better if I had the tracheostomy surgery. I knew I had to trust the experts and agreed. After depending on the ventilator for several weeks, I was nervous that I'd be unable to breathe on my own. The pulmonologist encouraged me to try speaking. I had to gasp for more air to finish a sentence, but that improved soon.

In the event that the ventilator is removed you will have to do breathing exercises and breathing treatments in order to strengthen the lungs. You may be encouraged to use an incentive spirometer, a small plastic gadget with a mouthpiece you inhale with. The suction will move a disc or a piston up inside a clear cylinder.

You may use a nebulizer which turns liquid medicine into a very fine mist that you inhale through a face mask or mouthpiece. Taking medicine this way allows it to go straight into the lungs and the respiratory system where it is needed.

When you are able to breathe without the ventilator, or take breaks from it, a small plug called a "speaking valve" can be placed in the stoma, making eating possible and speech easier.

Before my ventilator was removed I could only be heard by calling for the aides with a loud noise I made with my lips. I had my family write out a list of my requests and point to them so I could nod at the correct selection.

Staying on the Ventilator

For some high level quads, weaning off the ventilator isn't possible. But that doesn't mean you will be restricted to a bed or a facility. It also doesn't render one incapable of speech. With the use of a speaking valve which re-directs exhalation through the vocal cords and out through the mouth and nose, speaking is still possible on a ventilator.

According to a 2004 research study funded by a University of British Columbia regarding the quality of life among ventilator dependent people with spinal cord injury living in the community, more than 85% said their quality of life was at least average. Many said it was excellent! There are worse things than carting around a ventilator.

Bill (C1-2) has used a ventilator full-time for nearly 23 years.

"Anyone who is ventilator dependent should have two ventilators: one bedside, and one that is attached to your wheelchair. I learned to use my neck muscles to pull my chin down and chest up in a mini "sit up" motion. That allows me to take in air through the open trache/cannula and breathe without the ventilator, keeping my oxygen saturation in the 90s the entire time. I have gone for four hours without the ventilator. That is a nice safety net to have, but it requires conscious effort. I can breathe on my own during transfers which helps to keep my neck muscles strong."

Bill is able to eat by mouth and speak fine, though not "normally". When asked about self-image or gaping onlookers, Bill said it didn't bother him. "It's just how I breathe!"

"It's not the end of the world to be on a ventilator. It can be managed well, and an active, good life is possible."

Bill recommends a Cough Assist machine (available from multiple manufacturers) which removes secretions before they become problems like pneumonia. For high level quads, health insurance usually covers these pricey devices as long as you have a physician's order.

Keeping a Tracheostomy

How long post injury a quad needs before deep suctioning is no longer a part of daily life differs greatly depending on level and severity of your injury.

Following your injury you should have a suction machine at home. Sometimes they are provided by insurance. You can have your caregiver perform suction any time you feel or hear mucus rattling in the tube or airway. Rehabilitation facilities will typically train family members to become familiar with this procedure. Make sure to care for your trachea tube exactly how you were shown. Always follow the sterile procedure when changing the dressing and cleaning the inner cannulas.

A tracheostomy tube may eventually be removed when respiratory issues cease, and the stoma typically closes quickly on its own. Some quads keep the stoma open for clearing secretions by deep suctioning and in case of the need for swift ventilator help.

A little over a year after my injury a pulmonologist decided removal was safe in my case. Healing was quick and mucus overproduction subsided. I have now lived without one for over 10 years.