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.
Mechanical Ventilation
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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.
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
Tracheostomy
Ventilator
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.
