Your child’s primary physician will help assess for common reasons that respiratory symptoms develop, such as a viral illness. A pulmonologist or an otolaryngologist (ENT) can consider more complex reasons when respiratory issues continue. A speech therapist and radiologist can assess swallowing issues that cause aspiration. Complex care and palliative care clinicians can bring expertise when there is declining benefit from treatment, and when decisions arise around possible interventions or therapies.
Pulmonary
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The respiratory system is a network of organs and other body parts that allow us to breathe in oxygen (inhale) and breathe out carbon dioxide (exhale). This network includes the muscles that expand and contract the lungs and airways; the areas of the brain that transmit nerve impulses to the muscles, telling them to expand and contract; and the movement of oxygen and carbon dioxide between blood vessels and lung tissue. Children with SNI may have chronic respiratory problems, such as an altered ability to clear mucus from the lungs, shallow breathing, and aspiration. Other medical issues, such as gastroesophageal reflux disease (GERD), obstructive sleep apnea or central apnea, and neuromuscular (NM) scoliosis, can also affect the respiratory system. The impact of these problems can be reduced, though the problems cannot be cured and the benefit from treatment can decrease as the underlying condition progresses.
Adapting to Diagnosis
Collecting information, care and support as issues emerge for your child and your journey begins.
Building Strengths
Maximizing your child’s core skills and family resiliency to develop a foundation for the journey.
Adjusting to Changes
Making decisions and adapting to your child’s evolving baseline throughout the journey.
Navigating Decline
Re-orienting goals and finding support alongside declines in your child’s condition, preparing you for the end of your child’s journey.