Soins complexes à domicile pour enfants
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Everyday tips

Clothing

  • To maintain safe and easy breathing, your child’s clothes must not cover the tracheostomy. Clothing that allows easy access to the tracheal cannula should be used (eg, V-neck, button down shirts, sweaters and low cut round necked pyjamas).
  • Do not use bibs that attach with ribbons because they may get tangled up with the tracheal cannula ties.
  • Avoid clothing in fluffy fabrics or fabrics with ornaments or fibers that may become dislodged and enter the tracheal cannula (eg, small sequins or beads).
  • Do not put any kind of necklaces around your child’s neck.
  • Mittens used on babies and very small children can prevent them from accidentally pulling on the tracheal cannula.
  • Outings:
    • The use of an artificial nose, a respirator, or other types of protection (a thin scarf or cotton bib) prevents insects or other particles swept up by the wind, from penetrating into the tracheal cannula.
    • Avoid using plastic bibs to cover the tracheostomy because they may block the entry of air.
  • Winter/cold weather outings:
    • In some children, breathing cold air causes narrowing of the airways (bronchospasm) which makes it harder for the child to breathe. If your child is very sensitive to cold air, minimize the time spent outdoors during the coldest times of the year.
    • If an outing is necessary, keep your infant’s head and neck wrapped loosely in a blanket.
    • If your child is older, place a scarf loosely around the neck.
    • Leave the top coat buttons open so that the tracheostomy site is readily accessible.

Bathing and swimming

Always keep the tracheostomy site dry and clean, making sure that no water penetrates the tracheostomy.

Tracheostoma skin care:

  • Clean the skin surrounding the tracheostomy with warm sterile or boiled cooled water.
  • You can used a mild, non-perfumed, non-oily soap (eg, “Dove”), if recommended by your child’s health care team.
  • Never use:
    • perfumed products with additives (they can irritate and damage the skin surrounding the tracheostomy),
    • antibacterial soaps, antiseptics or disinfectants (they decrease the skin’s natural protection barrier against infection),
    • bar soaps (they leave a residue on the skin which may be irritating),
    • baby wipes, baby oil, powder, balm or lotion.
  • Use cotton tips (Q-tips®) or clean compresses dampened with the warm solution recommended by your child’s health care team.

To remove any encrusted secretions stuck  around the tracheostomy site:

  • Clean the skin with a 3% hydrogen peroxide solution diluted half/half with sterile or boiled water.
  • Immediately rinse with a clean compress or cotton tip (Q-tip®) dampened with sterile or boiled water; thoroughly dry the skin.
  • If any redness or bleeding occurs, stop using the hydrogen peroxide solution and consult your child’s health care team.

Bathing:

  • It is much safer to give infants sponge baths.
  • You may bathe older babies in a bathtub using a small amount of water; place a non-slip pad at the bottom of the basin to prevent your child from slipping and water from entering the tracheostomy.
  • Keep a towel close at hand to sponge up any water that may be splashed in and around the neck and tracheostomy.
  • Never leave your child unattended in a bath until your child clearly demonstrates the capacity to reliably keep water from entering his tracheostomy. If water accidentally enters the tracheostomy, suction the tracheostomy immediately to prevent infection.
  • If your child has trouble staying in a seated position, use a non-slip pad or a small bath chair.
  • The use of an artificial nose or a cotton bib can prevent water that is splashed from entering the tracheostomy.
  • Change the cotton ribbons or Velcro® bands, if wet, after the bath.
  • A shower is not recommended except in older children who can take the necessary precautions to prevent water from entering the tracheostomy (ex, direct the water jet away from the neck area, wear a shower tracheostomy protector); discuss options with your child’s health care team.

Washing of the hair:

  • Consider having another adult available to help you with this task, especially if your child is very active.
  • Lay your child down on his back on top of a sink or a hair basin designed for use in a bed.
  • If your child can collaborate, sit him in the bath with his head tilted backwards.
  • Carefully pour water on his head using a small container, making sure to prevent water from entering his tracheal cannula. If water accidentally enters the tracheostomy, suction the tracheostomy immediately to prevent infection.
  • Always rinse the hair with extreme caution.

Mouth care:

  • Your child’s mouth should be cleaned 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, 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.
  • As your child matures, teach and supervise brushing of the teeth.
  • Have your child rinse their mouth with warm water or use a low alcohol content mouthwash if recommended by your child’s health care team
  • Apply, if required, a hydrating lip balm.

Nasal hygiene:

  • In all children, secretions, along with bacteria and viruses collect in the nose. Keeping your child’s nose clean helps prevent lung infections.
  • In infants and children who are unable to blow their noses, saline drops are often used to clean the nose.
  • Refer to your child’s health care team for the technique and the frequency of nasal care recommended for your child, including the procedure for the preparation of homemade saline solution and safe storage.

Swimming:

  • Aquatic sports and swimming are not recommended.

Sleeping

  • Use pillows cases, sheets, and blankets made of washable synthetic material (hypo-allergenic).
  • Sheets that are very soft and fluffy with fibers (eg, flannel sheets) are not recommended: they attract dust and may shed fibers that can enter your child’s tracheal cannula.
  • Make sure that the relative humidity in your child’s room is at an adequate level; this prevents the airway from drying out and becoming irritated.

Nutrition and hydration

  • A child with a tracheostomy should always be supervised when eating or drinking by a person trained in emergency CPR measures. Discuss these measures with your child’s health care team.
  • If required, always suction your child’s secretions before meals. If you suction after a meal, coughing may cause your child to vomit.
  • A cloth bib is useful to prevent liquids from accidentally entering your child’s tracheostomy. Avoid plastic bibs that may accidentally block the passage of air through your child’s tracheostomy.
  • Certain children may have difficulty swallowing and may aspirate food and liquids into their trachea instead of normal passage of food through the esophagus to the stomach. To minimize the risk of aspiration:
    • verify your child’s capacity to safely drink and eat with your child’s health care team,
    • never leave your child unsupervised during meals,
    • never leave your infant alone with a baby bottle, even if your child is capable of holding the bottle,
    • if possible, place your child in an upright, sitting position when eating and drinking,
    • instruct your child to eat and drink slowly,
    • avoid using straws,
    • ask your child to chew his food well before swallowing,
    • if needed, provide small meals more frequently,
    • if your child chokes, coughs or seems to have difficulty breathing while eating or drinking, stop feeding and contact your child’s health care team for further recommendations.
  • Be aware that young children can mistakenly put food in their tracheostomy instead of their mouths, especially when they are beginning to learn to eat finger foods.
  • Avoid foods that are small in size (eg, nuts, candies) as these are a choking hazard. Wearing a bib cover is a good way to prevent your child from introducing food into the tracheal cannula.
  • Because a child with a tracheostomy does not breathe through their nose, they often have a diminished sense of smell and taste. Their appetite and interest in food may therefore be altered. Discuss with your child’s health care team.
  • Burp your infant regularly during drinking to avoid regurgitation which can increase the risk of tracheal aspiration. Position your infant on the side after meals.
  • Dehydration can cause your child’s secretions to become thicker and more difficult to clear. To avoid dehydration, ensure adequate fluid intake daily, especially during warmer weather and when your child is more physically active (eg, playing sports). Increase your child’s fluid intake when your child is ill, has fever, diarrhea or vomiting. Talk to your child’s health care team for specific recommendations.
  • Confirm the recommended daily amounts of fluids and nutrition for your child with your child’s health care team.
  • Advise your child’s health care team if these feeding difficulties are present:
    • difficulty or refusal to eat,
    • presence of food in the secretions coming from the tracheostomy,
    • coughing or frequent episodes of choking during meals,
    • vomiting during or immediately following meals,
    • excessive drooling or difficulty in swallowing saliva,
    • excessive quantity of secretions during or after meals,
    • secretions that resemble the liquids or food that were recently consumed,
    • weight loss or no weight gain.

Activities

  • Your child can participate in most regular activities as long as certain safety issues are respected. Discuss with your child’s health care team.
  • Always supervise young children during play.
  • Place your child in the most comfortable position to facilitate breathing, according to your child’s condition.
  • To protect your child’s tracheostomy and airway, the following activities should be avoided:
    • contact sports,
    • swimming,
    • playing with small toys or objects that can easily get lodged in the tracheal cannula,
    • playing with objects that easily break up into small fragments (eg, fuzzy toys) or that emit dust (eg, chalk, aerosolized paints),
    • playing in sand or crawling on dirty floors,
    • playing with latex balloons; small bits of the plastic from burst balloons are a choking hazard,
    • playing in close contact with a household pet; medical equipment and devices may be damaged or soiled (chewing, piercing of tubing with claws, etc),
    • playing with, pulling or removing the tracheostomy ties; explain to your child and your child’s playmates that the tracheostomy is not a toy.

Travel and transportation

  • Always have on hand a “travel kit” when leaving your home containing at least:

Emergency material:

  • a replacement cannula the same size as the one in use
  • a tracheal cannula one size smaller than the one in use
  • one obturator the same size as the cannula in use and one smaller than the cannula in use
  • a water soluble lubricant
  • an inner cannula, if your child has a 2 piece cannula
  • tracheal cannula ties (Velcro® band or cotton ribbons)
  • scissors with rounded tips (if during an emergency, the ties or Velcro® band needs to be cut)
  • suction catheters
  • a fully charged portable suction unit with connecting tubing and power cable
  • an extra connecting tube in the event that the one previously used becomes too saturated with secretions
  • a manual mouth suction catheter with mucus trap in the event that a suction unit is not available
  • a ventilatory bag with a tracheostomy adapter
  • non sterile gloves (if you cannot wash your hands or if you have cuts)

Material required for daily care outside the home:

– tracheostomy compresses
– cotton tips
– saline solution if needed
– half and half water/hydrogen peroxide solution
– boiled cooled water
– scarf (in case of wind and cold weather to protect the tracheostomy)
– artificial nose
– humidity device for naps or sleeping overnight (for long term outings)
– respirator, if required
– extra batteries, if required (respirator, suction unit)
– appropriate electric cables required
– oxygen cylinders, cylinder key, oxygen tubing, if required
– oxygen conserving device with extra batteries, if required
– second respiratory circuit, if required
– products required for the cleaning of medical equipment (depending on the duration of the outing or trip)

  • Have a list on hand of the contents of this kit so it can be easily restocked. Confirm with your healthcare team how often you should verify supply and status, including expiry dates, of equipment, materials, medications and solution.
  • Keep a resource list close at hand with the names and telephone numbers of hospital, doctors, other members of your child’s health care team and equipment providers. Make sure you know how to contact these resources outside of regular hours and during vacations.
  • During the winter months, always heat up the car interior before placing your child in the vehicle.

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 add a bit extra as a reserve,
  • make sure to ask if equipment providers and other resources are available in the event of equipment failure or other health care needs,
  • take the climate of your destination 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:

  • 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.

Others

Cardio Pulmonary Resuscitation (CPR): make sure that you and all persons responsible for your child’s care are trained. Consult your child’s health care team regarding referral to pertinent resources and the frequency of training renewal required.

Emergencies:

  • All caregivers should be knowledgable and skilled in trachestomy care including suctioning, emergency cannula removal and replacement.
  • 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).
  • Make sure that the company providing your home electricity is aware that a child with special (medical) needs resides in the home.
  • Also inform your local fire station.
  • Always keep emergency equipment required close at hand. This equipment must always be in your child’s room (eg, at his bedside) and brought along with your child to EVERY outing:
    • a replacement cannula the same size as the one in use
    • a tracheal cannula one size smaller than the one in use
    • one obturator the same size as the cannula in use and one smaller than the cannula in use
    • a water soluble lubricant
    • an inner cannula, if your child has a 2 piece cannula
    • tracheal cannula ties (Velcro® band or cotton ribbons)
    • scissors with rounded ends (if during an emergency, the ties or Velcro® band needs to be cut)
    • suction catheters
    • a fully charged portable suction unit with connecting tubing and power cable
    • an extra connecting tube in the event that the one previously used becomes too saturated with secretions
    • a manual mouth suction catheter with mucus trap in the event that a suction unit is not available
    • a self-inflating manual resuscitator with a tracheal cannula connector.
  • Discuss with your child’s health care 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.
  • With your child’s health care team, determine if a medical alert bracelet (eg, MedicAlert bracelet) containing key medical information such as is recommended.

Humidity:

  • The air that enters the nose and passes through the throat (pharynx) is naturally filtered, heated and humidified before reaching the lungs. Since your child breathes through a tracheostomy, and these natural processes are bypassed, dry, cold, non-filtered air inhaled directly through the trachea to the lungs can cause irriation, couth, mucus plugs and thick, sticky secretions. Without proper humidification of the air your child breathes, secretions are more difficult to clear, increasing the risk of blocked airways and increasing the risk of lung infection.
  • Avoid overheating the home in the winter and using an air conditioner in the summer to prevent excessively dry air.
  • The recommended relative humidity in the home, measured with a hygrometer, should be between 40 to 50%.
  • If your home air 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.
  • If your home air is too dry (less than 40%), the following daily habits can help increase the moisture in your home:
    • do not activate the exhaust fan when you cook or boil water,
    • avoid using an air conditioner in the summer,
    • keep the bathroom door open when you shower,
    • minimize the use of electric heaters, wood burning stoves and fireplaces during the winter,
    • eliminate carpeting and rugs in the home.
  • During the day, extra humidity is generally not required unless the air in your house is very dry, in which case a portable humidifier filled with tap water can be used in the day, during naps and overnight. You must change the water and clean the humidifier regularly according to the manufacturer’s recommendations to prevent the proliferation of bacteria and mold in the air that your child breathes.
  • The use of an artificial nose promotes inspiration of more humidified air and can be beneficial in some children with a tracheostomy, day or night.
  • Delivery of humidity directly to the tracheostomy is possible by using a tracheal collar connected to a nebuliser powered by an air compressor. Since the equipment can limit the child’s movement, it is preferable to use it at night and during naps. This equipment must be well maintained and cleaned in order to prevent the proliferation of bacteria and mold that could cause your child to develop a lung infection. Refer to your child’s health care team and to the manufacturer’s recommendations regarding the frequency and the methods of cleaning the equipment.
  • If your child uses a ventilatory assistance device, an integrated heated humidifier can increase the level of humidity as required during nightime and daytime use.
  • With your child’s health care team, discuss ways in which the level of humidity can be optimised in the air your child breathes for comfort and to aid in secretion mobilisation and clearance.

Air quality:

  • Air filtration protects the lungs from dust and other impurities.
  • The air that enters the nose and passes through the throat (pharnyx) is naturally filtered, heated and humidified before reaching the lungs. Since the air that your child breathes goes directly to the lungs without being filtered, dust and other particles in the air can easily irritate your child’s lungs and affect breathing.
  • Avoid all exposure to traditional or electronic cigarette smoke or vapour, especially at home.
  • Clean and regularly change filters on air conditioners.
  • In your child’s proximity, avoid:
    • use of products containing powder (eg, cleaning products, deodorants) or in aerosol form (eg, air fresheners, room fragrances),
    • presence of chemical products (eg, bleach, ammonia) or substances that give off strong odors (eg, paint remover, paint, nail polish, perfume).
  • To prevent irritating particles from entering your child’s airways, avoid areas 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),
    • pets that shed fur or feathers (pieces can enter the tracheal cannula),
    • insects, leaves, etc.
  • 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.
  • Contact your child’s health care team for other suggestions regarding protecting and filtering the air your child breathes via tracheostomy (eg, using a scarf, artificial nose, etc).

Prevention of infections:

  • A tracheostomy is an open door for entry of bacteria that may be present in the environment. Since the air that your child breathes bypasses the natural protective structures such as the nose, mouth and pharynx, the risk of your child contracting a lung infection is increased. It is important that you do everything possible to reduce this risk like controlling the humidity, the temperature and the quality of air that your child breathes.
  • Always wash your hands before providing care to your child and have your child wash his hands before and after all meals and frequently during the day.

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.
  • In accordance with your child’s health care team’s recommendations and depending on your child’s condition, avoid high traffic areas (eg, shopping centres, daycares) to reduce the risk of exposure to bacteria and viruses.
  • The annual flu vaccine and vaccines which provide protection for pneumonia are also good prevention methods for the child and family members; discuss this with the health care team.

Disinfection of working surfaces:

  • Table and counter tops used as working surfaces during the care of your child must be disinfected before each procedure.
  • Here are some solutions recommended for disinfection of working surfaces:
    • rubbing alcohol 70%,
    • household chlorine bleach diluted ½ tsp bleach (the less concentrated) in 1 cup of tap water,
    • acetic acid household white vinegar diluted to a 1.25% solution: mix 1/3 cup of vinegar 5% with 1 cup of tap water,
    • other home cleaning products (check with your child’s health care team for specific products).
  • Do not use sprays because the aerosol particles dispersed in the air can affect your child’s breathing.
  • Rinse and dry all surfaces thoroughly before using.
  • If you decide to use a clean towel for the workspace, make sure to regularly clean all working surfaces at least once a week.

Maintenance and cleaning of medical supplies and equipment:

  • Equipment should generally be cleaned once per week or more frequently if soiled.
  • Clean according to the manufacturer or your health care team’s recommendations specific to your child’s condition, comfort, safety, and environment.
  • Below is a suggested method that can serve as a guide:
    • Always wash your hands, before starting.
    • Prepare the sink: wash it, disinfect it with bleach and then rinse thoroughly with running tap water or use a large dishwater bowl reserved only for the cleaning of your child’s medical equipment.
    • 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 a sink or in a dishwashing bin filled with warm water and non-perfumed, non-antibacterial dish soap (eg, Sunlight), for 10 to 15 minutes.
    • Follow the manufacturer recommendations for the soaking of certain parts, if required.
    • Never use bleach, alcohol or non-diluted 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/hot water.
    • Allow all parts to dry on a clean towel placing them in such a fashion that will allow water to drain away from them.
    • Reassemble all components once thoroughly dry.
    • Store the equipment that is not in use in a bag used only for this purpose (eg, cotton pillowcase) or in a clean container with a lid that will protect the equipment from dust and dirt, according to your child’s health care team recommendations.

Communication:

  • Sounds and voice are products of the passage of air coming from the lungs as it passes through the larynx where the vocal cords are found. Since a tracheostomy is just below the vocal cords, your child exhales the air from his lungs without it passing through the vocal cords.
  • The capacity of a child with tracheostomy to produce sounds will vary depending on the child’s condition. It is therefore possible that your child may be unable to speak, make sounds or cry.
  • Learn to observe your child’s non verbal behaviors and facial expressions to better understand what your child is trying to communicate.
  • Depending upon the abilities and capacities of your child, alternate forms of communication may be used, including: hand signals, symbols on a card or screen, communication board, writing, sign language, etc. A speech-language specialist can help identify the methods that suit your child best.
  • During your child’s naps or at night, different methods of communication can be used to alert you rapidly to a problem:
    • a bell attached to your child’s foot or wrist can tell you that your child is moving (if young and not independent),
    • an infant monitor, with or without a camera, at the bedside,
    • a bell next to the bed, if your child is capable of activating it independently.
  • Depending on the underlying medical condition, some children may benefit from a type of tracheal cannula or equipment that will allow them to make sounds or speak:
    • a speaking valve,
    • a fenestrated cannula: used in adolescents,
    • a smaller size cannula in younger children that allows leakage of air around the vocal cords when the child exhales.
  • Communication with your child is essential; discuss the best strategies to optimize your child’s language skills and capacities with the health care team.

Daycare and school:

  • Your child’s health care 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.

Living with a tracheostomy: As with other types of complex care, living with a tracheostomy is an adjustment for both the child and the family. Review the topics in Prepare your child, Prepare yourself and Prepare your home for many more suggestions to help you, your child and your family cope and thrive.


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