Your child’s primary physician will assess when there is a new complication such as pneumonia. A pulmonologist and otolaryngologist (ENT) can consider management options, including referral to a respiratory therapist and physical therapist. A speech therapist and radiologist can assess for aspiration due to excessive secretions. Complex care and palliative care clinicians can provide expertise when complications become more frequent and associated distress is more troublesome.
Secretions and Mucus
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Altered ability to clear respiratory secretions is common in children with SNI, as impairments from the underlying diagnosis may complicate the body’s natural mechanism–coughing–for clearing mucus and secretions in the mouth, airways, and lungs. Difficulty in clearing secretions makes breathing hard work. There are interventions that can help assist the body to clear mucus and decrease the amount of secretions.
Drool
When saliva is not routinely swallowed, watery secretions, called sialorrhea (drooling), spill out. Some children with SNI experience an increase in the production of saliva, and it can be a side effect of some medications, overall daily fluid intake, or other issues such as infection, pain, or changes in the mouth (such as teething).
Managing drool is important for two primary reasons:
- Excessive drooling can result in the breakdown of skin on the face and neck, leaving the skin vulnerable to infection.
- Excessive saliva can be difficult for the child to manage through swallowing, which increases the likelihood of it being accidentally breathed into the lungs or aspirated. The aspirated saliva may add risk of infection in the lungs. In children with SNI, the ability to swallow often diminishes over time.
Mucus
Children with SNI can also have difficulty clearing mucus, a thin liquid that is produced in the nose, airways and lungs. Mucus serves as a barrier to the particles we breathe in, and keeps the tissue in these areas from drying out. Mucus can become thicker when there is debris, bacteria and inflammatory cells present. This mucus is called sputum or phlegm. Inflammatory cells help clear bacteria that enter the lungs and fight infection in the lungs when it develops. Children with SNI often need help with clearing phlegm, as they are not able to produce a cough sufficient to clear their lungs. Clearing phlegm helps decrease the possibility that pneumonia will develop.
Interventions
Interventions that can help reduce secretions or clear mucus from the lungs include:
- Positioning to support breathing. Different positions, sometimes called postural drainage, can improve drainage of mucus and secretions. A respiratory therapist can help you identify appropriate positions for your child and recommend a frequency for position changes.
- Nebulizer treatments, in which saline is inhaled to make mucus watery and loose, and easier to clear. Nebulizer treatments are often used in conjunction with additional interventions such as suctioning.
- Suctioning, to remove secretions with a device called a suction machine. Suctioning the airway involves inserting a catheter into either the nose, mouth, throat or trachea. If it is determined that a suction machine will improve your child’s breathing, your medical team will prescribe the most appropriate type, and will train you on how and when to use it.
- Percussion, a form of chest physical therapy in which cupped hands rhythmically strike the chest (also called cupping or clapping). The purpose is to break up thick secretions so that they can be removed either by coughing or suctioning. Percussion is typically coupled with postural drainage (positioning) and is performed by a respiratory therapist, physical therapist or nurse. Parents or caregivers can also be trained.
- Pulmonary vest (high-frequency chest wall oscillation), involving a vest that is placed on the child and is connected to a machine that makes the vest inflate and deflate rapidly. The oscillation can help move mucus forward, making it easier to then cough out. A clinician must indicate why a pulmonary vest is medically needed before insurance can cover the cost. Because chest physical therapy can typically be used, it can sometimes be difficult to get approval for this device.
- Insufflator-exsufflator cough production device (like CoughAssist), which helps mimic a cough. A mask is placed over the child’s face or connected to a tracheostomy tube. The machine sends pressure into the lungs, rapidly followed by negative pressure. The rapid shift to negative pressure simulates a cough.
- Medications to decrease saliva and mucus production. Medications can be given orally, by feeding tube, by skin patch, or inhalation. Medications are monitored for too much drying, which can make secretions in the lungs too thick and more difficult to clear. The medical team can also assess whether your child is taking a medication that can increase the production of saliva. Decreasing the dose or stopping the medication, if this is an option, can then help.
- Procedures that can decrease saliva production in the mouth include injecting botulinum toxin into the salivary gland, and surgical ligation or removal of the salivary gland. These options would be reviewed with an otolaryngology specialist (ENT).
Respiratory issues can push a caregiver deeply into a nursing role, which can impact one’s ability to parent. Respiratory issues also often allow a child to qualify for home nursing. However, respiratory events do not necessarily happen on a schedule, so you and/or someone else will need to be willing and competent to manage some nursing tasks if there is no nurse present.
It can be a challenge to turn over any care of one’s child to another person–even another family member. And yet when respiratory issues begin to predominate, the burden of care can become unrelenting. If you are considering home nursing and are reluctant to place the care of your child in the hands of a qualified stranger, remember that you are only ceding those tasks that can in fact be done by another person. No one but you can parent your child but you.
