Everyday tips

If your child has a tracheostomy, refer to the appropriate section.

• If your child has a tracheostomy, refer to the appropriate section.

Mouth care:

• It’s important to clean your child’s mouth at least twice a day.
• If your child has no teeth, use a small face cloth or a gauze dampened with water and rolled around your index finger, to gently rub your child’s gums front to back.
• Once teeth start to appear, it is important to brush your child’s teeth after each meal and at bedtime. Since young children have a tendency to swallow toothpaste instead of spitting it out, use only the size of a small grain of rice in children under 2 years old and the size of a small pea in children up to 6 years old. Use this time to also gently massage their gums with the toothbrush.
• Have your child rinse their mouth with warm water or use a low alcohol content mouthwash if recommended by your child’s healthcare team.
• Apply, if required, a hydrating product for the lips if they are chapped and dry.

Nose care:

• Whether your child is a nose breather or not, secretions, possibly with viruses and bacteria, will accumulate. Since the nose is connected to the lungs via the trachea, it is important to keep the nose clean if your child is incapable of blowing his own nose effectively. This action will decrease the risk of infection and improve breathing.
• The nose may be kept clean through a combination of suctioning and rinsing the nose with a salt water (saline solution). There are a variety of devices available for these purposes. Talk to your child’s healthcare team to find the method most appropriate for your child, including the preparation of homemade saline solution and the proper storage of this solution.

If your child has a tracheostomy, refer to the appropriate section.

• Place your child in the most comfortable position to facilitate breathing, according to your child’s condition.
• If your child has a tracheostomy, refer to the appropriate section.

If your child has a tracheostomy, refer to the appropriate section.

• If your child has a tracheostomy, refer to the appropriate section.
• Always have on hand a “travel kit” containing the essential items required for the cough assist technique used for your child, (interface, modified ventilatory bag, in-exsufflator device, anti-bacterial filters, tubing, suction device, catheters, wipes, cushions, pillows, paper tissues). Keep a list of the contents of your travel kit so that it is easy to restock when needed. Confirm with your healthcare team how often you should verify supply and status, including expiry dates of equipment, materials, medications and solutions.
• Keep a list of key contacts close at hand with the names and telephone numbers of the hospital, doctors, other members of your child’s healthcare team and equipment providers. Make sure you know how to reach these contacts outside of regular hours and on holidays.
• Before leaving on a trip:
  • make sure you have a document from the healthcare team describing your child’s condition and tracheostomy care needs and a complete list of medication.
  • bring enough supplies to last for the duration of the trip and several extra days;
  • make sure to ask if equipment providers and other resources are available at your destination in the event of equipment failure or other healthcare needs;
  • take the climate of the region you will be visiting into consideration because the relative humidity of the ambient air could modify the quantity and the consistency of your child’s secretions.
• For travel by airplane:
  • make sure to contact the airline company to inquire about their policy concerning the transport of medical equipment;
  • keep all medical equipment, supplies and medication with you in the cabin.

Cardio Pulmonary Resuscitation (CPR): make sure all of your child’s caregivers are trained in CPR. Consult your child’s healthcare team regarding training and renewal of training requirements.

Emergencies:

• If your child has a tracheostomy, refer to the appropriate section.
• Always have a telephone nearby in case of an emergency. Make sure your cell phone is charged at all times. When you go out, bring what you need to charge the phone, when necessary (cable with charger and portable Power Bank charger).
• Alert utility and emergency care providers that your child has special medical needs.
• Discuss with your child’s healthcare team whether your child requires monitoring by a trained and competent individual capable of intervening, as needed; during the day, night or at all times.
• Discuss with your child’s healthcare team the need for a medical alert bracelet (eg, MedicAlert bracelet) containing key medical information.

Humidity:

• If your child has a tracheostomy, refer to the appropriate section.
• Your child needs to live in an environment that is sufficiently humidified so that the secretions can be easily cleared.
• Avoid overheating the home in the winter and using an air conditioner in the summer so that the air in your home is not too dry.
• The recommended relative humidity in the home, measured with a special device called a hygrometer, should be between 40 to 50%.
• If your home is too humid (55% and more), install a dehumidifier and clean it every week in order to prevent the presence of mold in the air that your child breathes.
• On the other hand, if there is not enough humidity in your home, some daily habits can increase the level humidity in your home such as:
  • minimize use of the kitchen exhaust fan when you boil water;
  • avoid using an air conditioner in the summer;
  • keep the bathroom door open when you use the shower;
  • minimize the use of electric heaters, wood burning stoves and fireplaces during the winter;
  • eliminate carpeting and rugs in the home.
• Talk with your child’s healthcare team for more suggestions on how the humidity in your home can be optimized.

Air quality:

• Avoid all exposure to traditional or electronic cigarette smoke or vapor, especially at home.
• Regularly clean or change the filters on the air conditioners.
• Avoid places where there is:
  • accumulation of dust, presence of rugs, upholstered furniture and home accessories that are difficult to clean (eg, heavy drapery,
  • dust from renovations,
  • wood burning heating systems (stove or fireplace),
  • excessive pollution (eg, smog, heavy traffic, strong winds),
• In your child’s room:
  • avoid the presence of toys and stuffed animals in your child’s bed,
  • use pillows cases, sheets, and blankets made of washable synthetic material (hypo-allergenic),
  • sheets that are very soft and fluffy with fibres (eg, flannel sheets) are not recommended: they attract dust and may release fine fibres that can enter your child’s tracheal cannula,
  • wash bedding in hot water every week in order to destroy dust mites,
  • dry bedding in a dryer if your child is allergic to pollen.
• If your child has a tracheostomy, refer to the appropriate section.

Infection prevention:

• If your child has a tracheostomy, refer to the appropriate section.
• Before providing care to your child, always wash your hands.
• Prevention of respiratory infections:
  • If you have a cold, the flu or another respiratory infection, use non sterile gloves and wear a mask when providing care to your child.
  • Avoid exposing your child to anyone that has a cold, the flu or other respiratory infection with or without a cough.
  • Depending upon your child’s specific needs and following the advice of your child’s healthcare team, consider avoiding areas such as shopping malls or daycare to minimize the risk of exposure to infections.
  • Consider annual vaccination against the flu for your child and the entire family. Make sure that your child’s immunizations are up to date. Follow the recommendations of your child’s healthcare team.

Maintenance and cleaning of medical supplies and equipment:

• The ventilatory interfaces (mask, mouthpiece) and the tracheal cannula adapter should generally be cleaned once per week or more frequently if soiled.
• Cleaning of the nose clip should be done as needed.
• Below is a suggested method that can serve as a guide.
• Always wash your hands, before starting.
  • Clean the sink: wash it with dishwashing soap and warm water, then disinfect it with bleach and then rinse thoroughly with running tap water or use a large bowl/tub reserved only for the cleaning of your child’s medical equipment. If you use a tub, clean with soap and warm water before each use.
  • Disassemble all the equipment (according to the manufacturer’s recommendations) so that all the parts can be cleaned thoroughly.
  • Rinse all the parts under warm tap water so as to remove any debris (eg, secretions, blood).
  • Soak all parts in the sink or in a tub filled with warm water and non-perfumed dish soap (not antibacterial) (eg, Sunlight™) for 10 minutes.
  • Never use bleach, alcohol or hydrogen peroxide to clean equipment; these products may damage the equipment.
  • If needed, brush the interior and exterior of the parts that remain soiled with a soft baby bottle brush.
  • Rinse all parts with warm water.
  • Shake off excess water as much as possible from all the parts that were rinsed.
  • Allow all parts to dry on a clean towel placing them in such a fashion that will allow water to drain away from them.
• Modified ventilatory bag: clean the exterior surface with a damp cloth and a mild soap if needed.
• In-exsufflator device and components:
  • clean the device exterior with a damp cloth and a mild soap once a week.
  • anti-bacterial filter: change the filter every month or more often, if soiled.
  • other components: clean according to the manufacturer or the healthcare team recommendations.

Daycare and school:

• Your child’s healthcare team will evaluate your child’s needs and will support you in the planning of integration to daycare or to school.
• Advise school staff of the treatment and care that your child requires.