Your child’s primary physician will help assess for acute changes in secretions or breathing, such as with pneumonia. A complex care clinician can consider chronic management options. A pulmonologist or an otolaryngologist (ENT) can consider more complex reasons when respiratory issues continue. A hospitalist or intensive care specialist brings expertise in treatment of acute episodes. Complex care and palliative care clinicians can provide expertise when acute illnesses become more frequent and associated distress is more troublesome.
Pneumonia, Mucus Plugs, Atelectasis, Tracheitis
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Acute respiratory illnesses in children with SNI can be due to many different chronic and acute problems, including aspiration, mucus plugs, pneumonia and atelectasis (the complete or partial collapse of the lung). The medical team will assess these problems and any underlying causes that also can be treated. Many of these treatments require a hospital stay and involve intravenous delivery of medications that help clear mucus from the lungs. Mechanical ventilation is also sometimes involved. The benefit from these interventions can decline over time, or become more difficult for the child to tolerate as their overall condition declines.
Pneumonia
Acute respiratory changes can also be caused by viral or bacterial infections, such as pneumonia. Pneumonia can present with faster or labored breathing, increased congestion, coughing, wheezing and fever. It may seem that minor symptoms very suddenly became much worse. Mucus can get thicker as there is more bacteria and inflammation, which can plug more areas of the lungs and further worsen breathing. A physician can often detect pneumonia by listening through a stethoscope for abnormal bubbling or crackling sounds in the chest. Pneumonia is then often confirmed through a chest x-ray. A blood test or sputum test may be used to identify the best antibiotic to treat the infection.
In some acute cases, a bronchoscopy may be ordered to assess a possible cause of an acute illness and clear mucus plugs, especially if symptoms are not improving with other therapies. A doctor inserts a small light with a camera into the airway through a tube that has been placed in the trachea. Bronchoscopy can be an effective way to check the airways or to take samples of mucus or infected tissue, but your child will need to be under anesthesia during the procedure.
Mucus Plugs and Atelectasis
Children with SNI often have weakened respiratory muscles or diaphragm muscles and are unable to take a deep breath that fully expands the lungs. This shallow breathing makes them more prone to acute respiratory events. Certain medications can contribute to shallow breathing. In some circumstances, mucus can accumulate in what is called a mucus plug, blocking an area in the lungs and reducing airflow. The blocked area can collapse from lack of air getting beyond the plug. The collapsed area can no longer bring oxygen into the body, resulting in a sudden drop in oxygen saturation (the level of oxygen being carried through the body with red blood cells). The partial or complete collapse of the lungs is called atelectasis.
When atelectasis is caused by a mucus plug, the acute change can be improved with an intervention that helps move mucus away from a blocked area in the lungs. Daily use of chest therapy, pulmonary vest, or cough assist machine can decrease the chance that a mucus plug and atelectasis will occur. Sometimes the plan you develop with your care team will include increasing the frequency of these interventions during acute illnesses.
Tracheitis
Children with a tracheostomy tube are more at risk for developing bacterial tracheitis, which is an infection in the trachea (windpipe). Tracheitis most frequently occurs following an upper respiratory infection–a common cold or flu. Tracheitis can present with fever, increased need for suctioning, increased effort of breathing, and/or a decrease in oxygen saturation. The tracheostomy tube also can get clogged with thick mucus, resulting in a sudden decrease in oxygen saturation. You will receive education in changing the tracheostomy tube at home and on when to seek medical help. You can contact your local paramedics to make them aware that you have a child at home with a tracheostomy tube should you ever need emergency help.
An acute respiratory illness can be frightening to witness. You can ask the medical team how likely it is that your child will develop an illness, but this is often difficult to predict. You might feel scared to ask, too. It is important to remember that being prepared for something that might happen is not the same thing as predicting that it will happen. Information doesn’t take the worry away, but it can help you feel reassured, more knowledgeable, better prepared and able to understand new information, and more in control of the decisions you may be asked to make.
Over time, you and the medical team might think of care plans that define treatments to begin at the time when certain acute symptoms start. Together you will determine when it is safe to use this plan at home, and when your child should be assessed by a clinician. When the respiratory problem is greater than what you can manage at home, please remember that you did not fail your child. It is your child’s medical condition that caused this to happen.
Identify what helps you cope. You may like to feel prepared in advance. Or, you might naturally approach life with an “I’ll figure it out when I need to” attitude and prefer to keep your focus on what your child needs now. Your approach might change as new experiences occur. Friends and professionals, such as a social worker through the hospital or your community, can be an indispensable support system as you work through your feelings and the decisions you need to make.
There may come a time when the medical team wants to talk about future “what-ifs.” For example, they may ask what you would want for your child if their breathing were to severely worsen with the next acute respiratory illness. Again, being prepared for something that might happen is not the same as predicting that it will happen. What might help you most is to reflect on the possibilities during times when your child is not acutely ill. There are questions that may have answers that are hard or scary to consider: How well does my child recover after each illness? Is there a return to the same baseline each time? Are they enjoying days as they did before? How do they look now compared to past photos and videos? Is the level of intervention required to regain that baseline increasing? You can use the answers to questions like these to help you ask the care team even more difficult questions, such as what care would look like if some interventions were not used in the future. There is support available to help you navigate these questions and your worries, as you also hope for your child to do well.
