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People with high-level cervical SCI may be unable to breathe on their own. In these cases, a machine called a ventilator may be used to assist breathing. If you use a ventilator, your healthcare team will help you and your loved ones adjust to it and use it safely.
Home ventilators are usually small and portable. Most types can be attached to wheelchairs. They can also be set up by the bed for use when sleeping. A ventilator works by pushing air (and extra oxygen, if needed) into the lungs. Common ways to deliver the air are through a tracheostomy (“trach”) tube or mask. If a trach tube is used, it is placed through a small hole (stoma) in the front of the neck and directly into the windpipe. If a mask is used, it is fitted over the nose, mouth, or both. The trach tube or mask is then connected to the ventilator. Some people need to use the ventilator all of the time. Others may only need it at certain times, such as when sleeping.
You will likely need assistance at home with your ventilator. You may also need additional help with your daily care routine. Things that may require help include:
Using and maintaining your equipment. For your safety, it is crucial that you and your caregiver know how to use your equipment. Built-in alarms will alert you and your caregiver when there is a problem. But your caregiver should know when to call 911 and be prepared to provide manual breathing assistance, if needed. Also, your ventilator needs a steady power source to work properly. It can run on batteries or be plugged into an electrical outlet, but it must be recharged daily. Be sure to have a backup power source and extra batteries ready in case of a power failure or other emergency.
Keeping your airways clear. Many people with breathing problems also have problems coughing. When this happens, too much mucus can build up in the lungs and airway. This makes pneumonia and other lung problems more likely. Your caregiver may need to perform regular suctioning to remove excess mucus from your lungs and trach tube, if you have one. He or she may also need to use assisted coughing techniques (also called “quad coughing”) to help move mucus out of your lungs. In some cases, a special cough machine may also be used to help bring up mucus.
Tracheostomy or nose and mouth care. If you have a trach tube, the tube will need to be cared for and changed regularly. The skin and area around the stoma will also need to be cleaned daily to prevent infection. If you have a mask, the skin the around the nose and mouth will need special care. Your caregiver can be shown the best ways to help with these care needs. This can increase your comfort and make problems less likely.
Along with the basic care you will need every day, you may have additional concerns. These can include:
Help with communicating. Your trach tube or mask may interfere with your ability to talk. Even if you have a speaking valve for your tube or if you can remove your mask for talking, the quality of your voice may be weak. You may not be able to speak very loudly or for long periods. A speech therapist can help you learn ways to make communicating easier.
Help with eating. Some people with a ventilator are able to eat normally. Others are at increased risk for aspiration (when food goes into the lungs). Still others may be unable to eat by mouth. In such cases, they may need equipment, such as a feeding tube, to help receive nutrition. Your healthcare provider will let you know if further care is needed to address issues with eating.
Help adjusting. It takes time to adjust to using a ventilator. If you’re having trouble coping, tell your healthcare team. They can help you get the support you need.
Using a ventilator for breathing can be challenging, but with help from your healthcare team and those closest to you, you can still find ways to be active and live well. Be sure to see your healthcare team for ongoing care as recommended. This allows them to monitor your health and progress. This also helps them support you in setting goals and achieving the best function possible.
For more information about SCI or using ventilators go to:
The National Spinal Cord Injury Foundation, www.spinalcord.org
Christopher and Dana Reeve Foundation, www.christopherreeve.org
Paralyzed Veterans of America, www.pva.org
International Ventilator Users Network, www.ventusers.org