Mechanical Ventilation

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Mechanical Ventilation

It is not uncommon for children with SNI to rely on mechanical ventilation at some point in their lives. Continuous Positive Airway Pressure (CPAP) or Bilevel Positive Airway Pressure (BiPAP) devices are often used during acute events, such as pneumonia, to ease breathing during treatment. CPAP and BiPAP may also be considered as chronic respiratory insufficiency develops over time. Chronic issues such as weak chest muscles, or a compromised airway, may make tracheostomy, with or without the use of a ventilator, a consideration.

Your Team:

Complex Care Clinician

An interdisciplinary specialist who helps manage the medical, social and emotional challenges of complex and/or long-term care.

Hospitalist

A physician who cares for patients inside a hospital.

Intensive Care Specialist

A specialist with expertise in the diagnosis, treatment, and support of critically ill and injured patients. They often work in intensive care units at the hospital.

Otolaryngologist (ENT)

A medical specialist in the diagnosis and treatment of diseases of the ear, nose and throat (ENT).

Palliative Care Clinician

A specialist whose aim is to improve the quality of life of their patients over the course of their illness regardless of stage, by relieving pain and other symptoms of that illness.

Pulmonologist

A medical specialist in the diagnosis and treatment of disorders of the respiratory system; the lungs and other organs associated with breathing.

Respiratory Therapist

A medical professional who treats problems with the lungs or breathing.

A complex care clinician, hospitalist, pulmonologist, otolaryngologist (ENT), respiratory therapist, and/or intensive care specialist can help you understand each option being considered. A palliative care clinician can help you identify difficult questions and provide support when considering complex decisions.

What Your Child May Experience

Breathing can be supported with a machine to treat an acute respiratory illness or for ongoing, or chronic, breathing support. A complex care clinician, pulmonary specialist, or palliative care team can help you sort through the use of these interventions. They will consider the details that are specific to your child. The use of acute ventilation and chronic ventilation often involve the same consideration: what is most important at this point in your child’s life, as it is often difficult to predict to what degree a child with SNI will recover from an illness. Machines that assist with breathing include:

CPAP or BiPAP

Continuous Positive Airway Pressure (CPAP) or Bilevel Positive Airway Pressure (BiPAP) machines, which push air and sometimes oxygen into the lungs through a mask that is held in place over the nose, or over the nose and mouth, with straps. A CPAP machine generally delivers a single pressure, while a BiPAP delivers two levels of pressure when the child breathes in and out. These forms of ventilation may impact your child’s feeding and cause other problems. The masks can force air into the stomach, resulting in abdominal distention and vomiting. The masks used with CPAP and BiPAP may cause skin irritation. Daily 24-hour use over years can alter the development of the middle of the face. Ask the team about trying different masks to find the best option for your child, and for help in anticipating and managing these issues.

Tracheostomy

A common consideration for children with SNI, Tracheostomy or “trach” is a surgically created opening in the front of the neck and the trachea, into which a tube is placed to keep the airway open. Some children will breathe more easily with the help of a tracheostomy tube, but others will experience limited benefit as their underlying disease progresses over time. Some will have a “trach” if a decision has been made to use ongoing home ventilation. Some families initially rely on CPAP or BiPAP as a way to keep their child comfortable while they consider the tracheostomy option.

Ventilator

Sometimes called a respirator or by its shortened name “vent,” is a machine that moves air in and out of the lungs through a tube that has been inserted into the trachea. The process of inserting the endotracheal tube is called intubation. In some cases, intubation with ventilation can be temporarily used to support breathing during recovery from an acute respiratory illness, and the tube is removed (extubated) when the ventilator is no longer needed. If this is not possible, tracheostomy is often a consideration.

The prospect of your child being dependent on a machine to breathe, even temporarily, will naturally raise questions about their future quality of life. There are benefits and downsides to the treatment options, and emotions may interfere with your ability to ask questions and to think through complex information that may be offered. These can be very difficult decisions, and there are no right or wrong answers. Take the time you need and gather a support team, including palliative care specialists, to help you form your questions about how each treatment option might affect your child and your family. The palliative specialists can then support you to assess the benefits and risks of the options.

A clinician might use the term “need” when reviewing the options. Ask the team to explain what they mean. “Need” is sometimes used to indicate that if it makes sense to support your child’s breathing chronically, then the best way to do that is with a tracheostomy tube or home ventilation. If you are considering mechanical ventilation at home, talk with the palliative team about the impact that having the equipment in your home will have on your family unit. You will be the best person to determine if the recommended treatment will give your child better days, or if it does not make sense given other complex problems that will continue–and whether treating your child at home will work for your family.

The best decision sometimes changes as your child’s condition changes. Sometimes a child has many medical problems that overwhelm the available treatments. These medical problems can then change how well your child can remain comfortable and enjoy each day. The palliative team can help you think about how to decide whether and when treatment is no longer beneficial. They can become the keeper of your goals and check in with you about what is important to you as your child’s illness changes over time.