What you need to know

about your child’s tracheostomy

EAST TENNESSEE CHILDREN’S HOSPITAL

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Caring for a child with a tracheostomy

(trach) can be challenging. We have

created a booklet for you to learn as much

as possible about your child’s new device.

Please feel free to ask any questions you

might have.

Caleb, age 2, andSpeech Pathologist Ashley Henegar

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Table of contents

My child has a trach. What does that mean? .................................................... 4

Why does my child need a trach? ......................................................................... 4

What supplies will we need? .................................................................................. 5

How do I best keep my child safe? ....................................................................... 6

How do I suction my child’s trach? ....................................................................... 8

How do I care for my child’s stoma? ..................................................................10

How do I change my child’s trach ties?.............................................................11

How do I change my child’s trach tube? ..........................................................11

How will I know if my child is ill? .........................................................................13

How do I perform CPR on my child with a trach? .........................................14

How do I prepare my home for trach care? ....................................................16

Who and what are my resources at home? .....................................................16

What about daily life for my child?. ...................................................................20

How do I prepare to go home? ...........................................................................21

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My child has a trach. What does that mean? • A tracheotomy is a surgery to create an opening in the front of the neck into the trachea (windpipe). • The opening is called a stoma. • A tracheostomy tube is placed through the stoma and into the windpipe to create a passage for air to enter and exit the lungs. • You may hear the tracheotomy (cut) called a tracheostomy (opening) or further shortened to just “trach”.

Why does my child need a trach? Every child’s needs are unique. Your child’s specific need will be explained by your surgeon and your care team.

Reasons children need a trach include:

• Some children have very small and/or weak airways that can become blocked by mucous or collapse easily. • Some children are unable to protect their airway by coughing and will need suctioning. • Some children have difficulty swallowing which can lead to choking or food getting into the lungs (aspiration). • Some children need help breathing with help from a ventilator (breathing machine).

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What supplies will we need? Trach Parts/Types

Supply checklist for your child’s care/environment: • suction machine with back-up battery power • self-inflating resuscitation bag with face mask • oxygen with proper delivery set up as ordered • humidification delivery system • two spare, clean trach tubes • one the same size • one size smaller • clean obturator • trach ties • trach tube cleaning kits • water-based lubricant • correct size suction catheters and or in-line suction catheter • cleansing solution (such as water; saline; clear, colorless, odorless liquid soap; peroxide) • gloves • cotton swabs • gauze • clean cups and container • any supply specific to your child’s care needs • emergency numbers • CPR steps (chart or poster) • phone

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Supply checklist for your child’s trach emergency to-go bag: • same size/brand tube and next smaller size (if your child uses a cuffed tube, include an uncuffed tube in the same size/brand and a 12mL Luer lock syringe) • scissors • packets of water soluble lubricant • self-inflating resuscitation bag with resuscitation face mask (one at the bedside and one that always goes with your child) • correct-size DeLee suction catheter • correct-size suction catheter kits • clean gloves • normal saline lavage

This to-go bag must be with your child wherever they travel. Check the contents of the bag regularly.

You may want to get a large backpack or small suitcase on wheels to take your to-go bag everywhere with you. You may also consider a stroller made for twins so you can manage all the equipment with your child.

How do I best keep my child safe? A key to keeping your child well is proper hand washing for all caregivers before providing care. Clean technique is recommended for care in the home. You may be asked to use sterile technique if your child is hospitalized.

Why is it important to wash my hands?Washing your hands often is the best way to avoid getting sick and spreading illness. As you touch people, surfaces and objects during the day, you collect germs on your hands. Germs also collect when you touch your eyes, nose or mouth. Your hands cannot be free of germs, but proper handwashing can limit the transfer of germs, bacteria and viruses.

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What if I do not have any soap or water?Washing your hands with soap and water is the best way to remove the most germs. If you do not have these, use an alcohol-based hand sanitizer. It is best to use one that is at least 60% alcohol. Sanitizers do not remove all types of germs. Sanitizers may not work well if you can see what is on your hands (dirt, grease, blood, etc.) Rub the sanitizer over your entire hands and fingers until your hands are dry.

What is the right way to wash my hands?There are steps to removing the most germs from your hands: • Prepare your towel if an air dryer is not available. • Wet your hands. The water can be warm or cold. • Lather your hands. The soap can be liquid, gel or a bar. Be sure to rub the soap: - to the backs of your hands - between your fingers - under your nails - up to your wrists • Scrub your hands for at least 20 seconds. Hum or sing your “ABC’s” or “Happy Birthday” twice to act as your timer. • Rinse your hands well under clean, running water. • Dry your hands well using a clean towel or an air dryer. Do not touch the water knob, towel rack or dryer button. Use a disposable towel or your elbow if needed.

When should I wash my hands?Always wash your hands before: • changing your child’s trach • working in the kitchen • preparing food • eating • treating wounds • giving medicine • caring for someone who is: - sick - injured - young (babies and other children) - elderly

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Always wash your hands when they look dirty or after: • preparing food, especially raw meat or chicken • using the bathroom or changing a diaper • touching an animal or any pet’s toy, leash or waste • blowing your nose, coughing or sneezing into your hands • treating wounds or an injured person • caring for someone who is ill, especially with vomiting or diarrhea • handling garbage, house or garden chemicals, shoes or dirty laundry • shaking hands with others

At Children’s Hospital, we ask that you add a few extra steps when caring for your child: • Wash past your wrists and to your elbows. • Remove any hand or wrist jewelry and false nails. • Alert us to anyone who may not follow these handwashing rules.

How do I suction my child’s trach? Suctioning removes mucous and/or saliva (secretions) and keeps the trach tube clear and open for ease of breathing. How often suctioning is needed varies for each child and may change over time. You will learn the signs specific to your child that can tell you when suctioning is needed.

Signs that suctioning is needed may include: • gurgling sounds or visible secretions coming from the trach tube • coughing • behavior changes (irritability, restlessness or decreased energy) • fast, hard breathing • skin color changing to pale, grey or bluish • ventilator alarms

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Special note: • Some children may need extra oxygen before and after suctioning. • The use of saline to thin secretions is sometimes needed but should not be used regularly. • If your child remains in distress after suctioning, change the trach to ensure an clear open airway.

Suctioning Supplies: • suction machine with pressure gauge, tubing, collection container and back-up battery power • correct-size suction catheters and/or in-line suction catheter _______________ • cleansing solution ___________________________________ • gloves (optional)

How to suction: • Wash your hands. • Set up supplies. • Turn on suction machine and check suction pressure. • Ensure correct catheter size and depth for suction. • Position child. • Put on gloves if needed. • Attach suction catheter to suction machine. • Recheck pressure and adjust if needed. • Insert catheter into trach to pre-measured depth (no more than 0.5 cm beyond length of trach cannula). • Apply suction and gently remove and rotate catheter for no longer than 10 seconds. • Pause and observe child for signs of relief or distress. • If needed, repeat suctioning after rinsing catheter with cleansing solution. • Place catheter in clean glove or container if it will be reused.

It is important to note any changes in what is normal for your child. The changes may indicate illness. Always notify your provider if: • suctioning is needed more often • color, thickness or odor of mucous changes

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Suction pressure parameters: 60-80 mm/Hg for infants 80-100 mm/Hg for children 80-120 mm/Hg for adolescents

How do I care for my child’s stoma?

Keep the area around the stoma clean and dry to prevent skin irritation and infection. Clean the stoma site at least two times a day or more if needed.

With infants or young children, trach care should be done with two people. One person will hold the child and the other while the other provides the care.

Stoma care supplies: My child’s 1. sterile water twice a day 2. cotton swabs stoma care 3. mild soap schedule 4. gauze pads will be: ______ a.m. ______ p.m.Steps for stoma care: • Wash your hands with soap and water. • Position child so the stoma area is easy to reach. • Wet the cotton swabs with _______________________. • Clean by wiping away from the stoma with the cotton swabs. Make one pass with each swab then discard. Be sure to remove all dried secretions. • Clean the neck flanges of the tracheostomy tube. • Dry the neck and skin around stoma with gauze pads. • Observe skin for redness, skin breakdown and odor. • Report any changes to your physician. • Do not use powder or lotions around the stoma area. Only use antibiotic cream if directed by your doctor.

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How do I change my child’s trach ties?

Ties are used to secure the trach in place. Ties are changed to prevent skin irritation and infection on the neck. Change ties daily and as needed when wet or dirty. A second person should assist during trach tie changes

Trach tie changing supplies: • clean ties • clean towel or gauze • cleansing solution

How to change trach ties: • Position child for comfort. • First person should hold trach in place with gentle pressure to flanges. • Second person should remove dirty ties, clean skin around neck, observe for skin irritation and then secure new trach ties. • Slip one finger tip between the ties and child’s neck to determine proper tightness.

How do I change my child’s trach tube?

Trach tubes are changed to keep them clean and free of mucous buildup. Frequency of tube changes is child specific and will likely change over time. Your provider and health care team will tell you how often to change the tube. A second person should assist during trach changes.

Trach tube change supplies: • Check care environment supplies (resuscitation bag, etc.) • Trach tube cleaning kit (clean towel, water-based lubricant, tube cleaning tools such as brush, gauze and pipe cleaners) • Cleansing solution • Clean trach, obturator and trach ties • Clean container for clean trach tube storage

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Special note: • Changing your child’s trach will often cause coughing, and mucous may come out the stoma. This can be gently wiped away with gauze or a tissue. • Your child may have a cuffed trach. The cuff will be inflated with air or water. The amount will be determined by your care team and may change over time. The contents of the cuff must be removed with a syringe before removing the trach.

How to change the tracheostomy tube: • Prepare supplies and clean area. • Place clean trach and obturator on clean area. • Secure clean ties to one side of clean trach. • Position child comfortably. If possible, place your child on his/her back with towel roll under the shoulders. This places your child in a slight head-tilt position. Your child’s head needs to be straight ahead and not turned. • Suction trach. Some children may need extra oxygen before trach changes. • First person should loosen ties while holding trach in place with gentle pressure to flanges. • Second person should moisten tip of clean trach and obturator with water-based lubricant. • First person should remove trach with an upward and outward motion. • Observe stoma and skin for problems. • Second person should insert a clean trach with a downward and inward motion. The helper holds the new trach in place with gentle pressure on flanges while removing the obturator. • First person should secure ties with one finger tip space between the tie and neck. • Comfort child and assess need for suction or extra oxygen. • Clean dirty trach and obturator per manufacture’s instructions. • Most cleaning kits include utensils for cleaning the trach. • Clean the outside and the inside of the cannula and the obturator with utensils provided and recommended cleansing solution. • Air dry and store in clean, dry storage container or plastic bag.

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My balloon amount is currently: ______________________ mL

My balloon must be filled with: o Air o WaterOther special notes about changing my child’s trach:

See emergency care section for steps to take if the trach will not go in.

How will I know if my child is ill?

Many children with a trach are often at risk for serious and sudden changes in health. Each child may have unique indications of illness. Notify your provider as soon as possible if you think your child may be ill.

Signs of illness: • fever and/or sweating • increased or different type of cough • changes in mucous (amount, thickness, color or odor) • increased work of breathing • skin color changes (look at nail beds and inner lip) • changes in behavior (irritability, sleepiness, etc.)

Learn CPR • Require all caregivers learn CPR. • Children’s Hospital provides a class at no charge. • You will be given a poster of the CPR steps. • We encourage you to bring as many grandparents and babysitters as possible. We will hold extra classes just for your family if needed. • The class can be arranged to best fit your schedule(s). Please discuss this with your nurse as soon as you feel comfortable. • Our CPR class has been scheduled for ______________ .

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How do I perform CPR on my child with a trach?

Step 1. Check for a response. • If your baby or child is not moving or breathing, gently pat the baby’s foot or shout “Are you okay?” to your child. • Do not shake the child.

Step 2. Shout for help. • If the child does not respond, shout for help. • If alone, follow steps 3-7 of CPR for 2 minutes. • Then call 911 or your emergency number.

Step 3. Open the airway by suctioning the trach. (A) • Suction trach quickly 2 times. • If catheter will not go in, change the trach. • Remember: there are no ties to hold the trach in after an emergency trach change.

Step 4. Take no longer than 10 seconds to look, listen and feel for breathing. • Look at the chest. Is it moving? • Listen and feel with your ear over the trach. Do you hear or feel breathing?

Step 5. Give 2 breaths. (B) • Attach the self-inflating emergency bag to trach. Squeeze the bag hard enough to get chest to rise in a normal manner. The breath should take one second. • You should feel the air go in and see the chest move. Give a second breath. • If the breath does not go in quickly, change trach and try again. • The goal is to deliver two effective breaths as you begin CPR. • Make a Y with your fingers to keep the trach in place when you are taking (or removing the) bag on and off. • Remember: there is no air flowing if the bag is not squeezed.

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Step 6. Begin chest compressions. (C) • Start chest compressions on a hard surface. • Draw an imaginary line between your child’s nipples. • Place your hands the way you were shown in class. Be careful not to press on the bottom or tip of the breastbone. • Press the chest downward about 1/3 to 1/2 the depth of the chest. • Compress evenly and smoothly. Allow the chest to return to its normal position. Keep your fingers on the breastbone. • Compress the chest at a rate of about 100 times per minute. • Give 30 compressions followed by 2 squeezes of the bag to give trach breaths. • Give five cycles of 30 compressions and 2 breaths. (This is about 2 minutes.)

Step 7. If you are alone, call 911. • Continue chest compressions while speaking with the 911 operator if possible. • Put them on speaker. Do not accept other calls. • Use wall poster from CPR class to remember CPR steps. • Send someone to meet EMS responders.

Step 8. Resume CPR. • Continue CPR until emergency personnel arrive and take over. • If child begins to breathe, do not cancel the 911 call. • Continue to monitor your child for breathing. • Add or raise the oxygen flow to 100%.

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How do I prepare my home for CPR?

Start now by getting prepared: • Keep a phone in the child’s room if possible. Write important details by the phone: - address - tips for finding home (type, color, driveway and how far off road) • Make a habit to always put the phone on charge when not in use. • Post address and directions to home near all phones. • Make your house or apartment number is clear for EMS personnel to see. • Make sure there is a hard surface ready in your child’s room for chest compressions. Other home environment tips: • Avoid airway irritants including smoke, pollution, allergens, perfumes and strong cleaning products. • Keep water from getting into the trach. • Play areas may need to be adapted for your child to prevent small objects and debris from entering the trach. • Request to be placed on your electric company’s priority service list for power outages. • Request to be placed on the high priority list for telephone emergency service. • A generator is good back up in case of a power failure.

Who and what are my resources at home?

Your child’s home health team and equipment providers will work to assist you in meting your child’s needs within your home. It is important to have a list of contact numbers when questions arise or for help trouble shooting equipment. Your home health contact may include: • home nursing • respiratory therapy • physical therapy • speech and occupational therapy • equipment and/or supply providers

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Provider names, titles, company names and numbers:__________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Oxygen at home: • If your child needs extra oxygen often or at all times, you may be given a home oxygen concentrator. This unit filters oxygen out of the room’s air. It then sends almost pure oxygen to the person or device needing it. This unit requires electrical power, but it means you will have fewer heavy oxygen tanks to worry about.

• You will also likely have oxygen tanks at home for several reasons. The tanks will be your back-up oxygen supply if your power goes out. A small tank can go with you when traveling away from home. There are different styles of tanks you may be given to use. Have your home health team teach you to read your tank’s pressure gauge. You must know when your tank is about to run out of oxygen.

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• Your child may need only compressed air to power a home device but not oxygen. In that case, you may be given a home air compressor for use. An air compressor may look similar to an oxygen concentrator, but they are completely different machines.

Rescue medicine can have some side effects. These are usually not dangerous. They tend to decrease in an hour or so. Possible side effects are: • high heart rate • muscle trembling and jitters • high activity levels • inability to rest or sleep

Rescue medicine is used only when needed. Call your doctor if you are using your rescue medicine often. Discuss with your doctor exactly when they would like you to call them.

Airway humidification: • Breathing air through a trach is different than through the upper airways (the nose and mouth).

• The upper airway moistens (humidifies), warms and filters the air we breathe. This natural process is bypassed due to the location of a trach tube. • Extra humidity will be needed to keep your child’s mucous thin and avoid clogging the trach tube. Thick secretions can cause extra coughing and irritation to the airway. Breathing dry air can also lead to increased chances for infection. Your provider will specify what type and how much extra humidity your child will need.

• Any gases coming from a concentrator, compressor or tank will be dry. Watch more closely than normal for trach clogging if your child breathes these dry gases without a humidifier.

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Airway humidification devices: • Tracheostomy mist collar

• Ventilator with humidifier

• Heat Moisture Exchange Device (HME); also called an “artificial nose”

• Room humidifiers – be very careful if you use a home humidifier. If not cleaned regularly and well, humidifiers can grow harmful molds and bacteria.

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What about daily life for my child?

Continuing to provide care for your child in a way that supports normal development may take extra effort and a few precautions. • Playing – Play is an extremely important part of a child’s life and should be encouraged and supported. Adapting play for a child with a trach may include avoiding: – rough activity – small toys with pieces that would fit in the trach – playing around water – playing in dirt or sand – blankets or stuffed animals with excess fur

• Sleeping – Most children with a trach will use some extra airway humidity when asleep. Some children require a monitor while sleeping. Specific recommendations for your child will be provided by your health care team.

• Bathing – Use extra caution to keep water from entering the lungs through the trach. Avoid dunking and splashing. Never leave your child alone.

• Clothing – Avoid clothing that could cover the opening of the trach. Avoid clothing with small buttons, glitter, sequins, beads or fur that could come off and enter the trach.

• Talking – Speech may be affected in a child with a trach tube. Your health care team will help you and your child with speech development. Some children learn to exhale around their trach tube to make sounds. Some children may need a speaking valve to make sounds. The Passey-Muir valve is one type of speaking valve.

• Eating – Having a trach does not affect your child’s ability to swallow or eat. Some children who need a trach have other problems that affect swallowing and eating. Your health care team will help you create a diet to meet your child’s nutritional needs.

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How do I prepare to go home?

o Plan for transition home with the Care Coordination Team:

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Additional notes

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Additional notes

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Form No. 31544 (03/16)www.etch.com

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