Pulmonary Patient Guides

The bronchoscope is a small, flexible tube that can be easily passed through a child's nose. The flexible tube carries a fiber optic system that attaches to a video camera and light source. The image from the open end is transmitted through the fiber optic system to a video camera.

A trans-nasal flexible fiber optic bronchoscopy is a procedure where a physician examines various parts of your child's respiratory system using a device called a bronchoscope. These definitions may help you understand the procedure and its tools:

• Trans-nasal: When the soft, flexible tube of a bronchoscope is passed through the child's nose
• Flexible bronchoscopes: A device that's soft, flexible and easily passed through the nose and airways in the lungs, which allows clinicians to see inside these hard-to-reach places
• Fiber optic bronchoscope: A device using fiber optic technology to transmit an image from the tip of the tube to a video camera
• Bronchoscopy: An evaluation of the respiratory system, including voice box (larynx), wind pipe (trachea) and the airways (bronchi) to see if there are signs of an abnormality. Your child's physician can see these structures during different stages of the breathing cycle and monitor the progress of any abnormalities.

In a bronchoalveolar lavage (BAL), the physician injects a small amount of saline through the bronchoscope into the airways and then sucks it back through the bronchoscope. The fluid obtained contains saline plus secretions, bacteria (if present) and cells. This sample is sent to the laboratory for various tests.

Your child will not be allowed to eat or drink for four hours prior to the procedure. This is very important in order to avoid vomiting.

Once your child arrives, our staff will take height and weight measurements and vital signs. Your child is then brought to the procedure suite and examined. You will be asked a series of questions.

Your child will receive an intravenous (IV) line. Monitors are attached to your child in order to watch vital signs. Small children may need to be swaddled. Children will not be restrained unless absolutely necessary for their safety.

At UChicago Medicine Comer Children's Hospital, our experts take every step to ensure the safety and comfort of your child. Typically, a flexible bronchoscopy is not done under general anesthesia, but your child will be given medications through an IV for sedation. Your child will be able to wake from this deep sleep.

Numbing drops will be used to numb the nose, back of the throat, larynx, trachea and bronchi. Lidocaine prevents irritation, cough and sneezing.

Once the numbing medication takes effect, the bronchoscope is inserted.

Once the IV is in and all monitoring equipment is attached, the procedure takes less than 15 minutes to complete. If a bronchoalveolar lavage is needed, this takes a few additional minutes.

After the procedure, your child will be monitored while the effect of sedation and numbing medicine wears off — usually about 30 minutes. Your child must be fully awake, able to drink clear fluids and no longer exhibit signs of sedation before going home. The full recovery process takes around an hour. Your child's physician or nurse will be able to tell you the approximate time for your child.

Your child's doctor will give you personalized instructions prior to the bronchoscopy. This information will instruct you not to feed your child for four to six hours before the procedure.

If your child is old enough, explain as much as much as you feel is appropriate.

The following information will help ensure a smooth procedure:

• Pack one or two favorite toys, blankets or activities to help your child relax before and after the procedure.
• Pack a favorite snack or lunch. Your child will have to eat before being allowed to go home.
• Make sure you know the names and amount of any medications your child is taking — or bring the bottles with you.
• If your child has any other medical condition, you will need to tell the physician performing the procedure.

Although each child is different, there are usually little or no side effects from this procedure. Some of the possible side effects include:

• Fever: A mild fever may occur but is rare. Over-the-counter fever medicine will help.
• Nosebleed: Since the lining of the nose is very delicate, a nosebleed may occur. Typically, it will stop on its own.
• Noisy breathing: A change in voice or noisy breathing may occur, but it is usually temporary.
• Wheezing: Some children with a history of lung disease, such as asthma, may need additional medication to treat signs of wheezing both prior to and after the procedure.

Many children need oxygen when they go home from the hospital. Oxygen is used for many different conditions, including:

• Bronchopulmonary dysplasia (BPD)
• Congenital heart disease
• Cystic fibrosis (CF)
• Tracheostomies
• Other rare diseases

Your child's doctor and health care team will determine if your child needs additional oxygen in order to keep the right amount of oxygen in the blood.

Oxygen is often needed to keep the child comfortable, decrease the amount of work needed to breathe and, in some cases, help your child grow. Some children are placed on oxygen to prevent problems with their heart.

Download Oxygen Cylinder Chart for Pediatric Patients (PDF)

There are three different types of oxygen therapy systems:

• Compressed oxygen cylinders, or "green tanks"
• Oxygen concentrators
• Liquid oxygen systems

Compressed Oxygen Cylinders

Oxygen Concentrators

Liquid Oxygen Systems

These systems consist of a large silver main tank and one or two portable units. The portable units are used as needed for travel outside of the home. When they are empty, they can be refilled from the large tank. Portable units weigh 8 to 10 pounds and can be carried with a shoulder strap or cart. Liquid oxygen will evaporate if not used frequently; therefore, portable units should be filled just prior to use. The liquid systems are often more costly.

Other Necessary Equipment

You will have a regulator/flow meter delivered with your home oxygen system. The amount of oxygen your child gets is measured in liters per minute and, in some cases, fractions of a liter per minute. Make sure you have the correct type of flow meter to deliver the prescribed amount of oxygen for both your main and portable systems.

Oxygen extension tubing is also available. However, for small children on small amounts of oxygen, it is recommended that no more than 14 feet of extension tubing be used.

Your oxygen supply company should supply written information to you on the set up, care, use and troubleshooting of your child's oxygen system.

Cost

Home Aerosol Masks

If your child is discharged on an aerosol mask, you will have the following equipment delivered to your home in addition to your oxygen system:

• Air compressor
• Nebulizer jar with an air entrainment device
• Two liter drainage bag
• Corrugated "blue" tubing
• Aerosol masks
• Oxygen adapter

Distilled water is used to fill the nebulizer jar to create the mist for humidification. The nebulizer jar is attached to one of the oxygen systems and the air entrainment device. Oxygen is then "bled-in" using an oxygen adapter. You will need to dial the appropriate setting to create the percentage of oxygen that has been prescribed for your child.

For aerosol set-ups, the home care company will use an oxygen analyzer in your home to verify oxygen percent delivered. A chart with compressor flow and oxygen flow to get the specific oxygen percentage should be provided by your home care agency.

Tracheostomy Collar/Masks

If your child is discharged home with a tracheostomy collar, you will have the following oxygen delivery equipment delivered to your home in addition to the oxygen system:

• Air compressor
• Nebulizer jar with an air entrainment device
• Corrugated "blue" tubing
• Water drainage bags
• Heater (used in children up to 10 years of age)
• Tracheostomy collar/masks
• Oxygen adapter to "bleed-in" oxygen into the tracheostomy collar/mask
• Venturi transport device for trips outside of the home

Distilled water is used to fill the nebulizer jar to create the mist for humidification. The nebulizer jar is attached to the air compressor and the air entrainment device. Oxygen will be "bled-in" using an adapter. You will need to dial the appropriate setting to create the percentage of oxygen that has been prescribed for your child.

Tell Key People

The following people should know that you have a child at home on oxygen and/or apnea monitor:

• Your local fire department
• The gas, electric and telephone companies. Ask if they have a "priority service listing." Your home would receive priority in case of power or phone failures and repairs. Your physician, case manager, social worker or home care company can assist with letters to these companies, if needed.
• Neighbors and relatives who will be available in case you need assistance with your child or other children in an emergency

Prepare an Emergency Phone List

Put together an emergency phone number list to keep available at each phone, in your purse or bag and in your child's diaper/travel bag. This list should include:

• Child's name, birthdate, address and phone number
• Parent's names, and home and work phone numbers
• Emergency contact name and phone (neighbor, grandparents)
• Emergency phone for police or fire departments (i.e. 911)
• Doctor(s) name, office address and phone number
• Home oxygen supply company and phone number
• Home nursing agency (if appropriate) and phone number
• Pharmacy name and phone number

Safety Proof Your Home

Taking the following precautions will ensure the safety of your child and other family members:

• Do not smoke inside when oxygen is in use.
• Do not cook over an open flame with your child in your arms.
• Do not use oil or grease on the oxygen equipment, your hands or on your child. No Vaseline or baby oil — they are flammable.
• Do not use hair dryers while oxygen is being administered.
• Do not let your child sleep with electric blankets while on oxygen.
• Store your oxygen in a safe/secure area — not in closets or areas that are not well ventilated.
• Be careful of the hazard of tripping over the oxygen tubing.
• All children should be supervised in the presence of any medical equipment. Some active children may tangle or wrap themselves in the tubing. Taping the tubing to the back of their shirt is helpful.
• Be familiar with the oxygen equipment safety checks established by your equipment provider. Keep their telephone number handy. Do not repair broken equipment yourself. Leave it to the experts.
• Keep your child and the oxygen equipment away from space heaters, fireplaces, humidifiers and other heat sources.
• Have a working smoke detector. Check the battery monthly. Make sure you have a "Type ABC" fire extinguisher.
• For all electrical equipment, use a grounded outlet. If the outlet is not grounded, use a plug adapter.
• In case of a fire, develop and practice a rescue plan and route of escape. 

Think About Monitors

Create Teaching Sessions

• Oxygen equipment set up and trouble-shooting
• CPR
• How to feed a child on oxygen
• How to position a child for more comfortable breathing
• Bathing a child who is on oxygen and skin care issues, such as tape for nasal cannulas
• What to do if a child appears to be in respiratory distress
• Emergency plan — including who to call, which ER to go to and who will care for other children during this time
• How to travel with oxygen — including securing the oxygen tanks, understanding precautions, packing a travel bag and having a sufficient supply of oxygen for travel
• No smoking in the home
• How to use the fire extinguisher
• Other oxygen safety precautions

Your child's feeding time is a special time for sharing, interacting and bonding. Children requiring oxygen often are difficult to feed and meals may take longer.

Feed your child in a quiet, relaxed environment. Your child may need frequent breaks during the meal. Position your child for maximum comfort. Be patient and your child will soon establish a pattern for meals.

You may need to feed your child smaller, more frequent meals. Talk to your child's doctor and dietitian about a prescribed diet.

Timing is important. If your child receives breathing treatments, chest physiotherapy (CPT), and/or suctioning, do the treatments approximately 30 minutes before a meal. This will allow your child time to recover and settle down before eating.

For infants, it is very important that you plan to feed them several times before you go home from the hospital. Work with your child's nurse or health care provider to establish a feeding schedule. Holding and interacting with your child during mealtime is crucial — particularly if your child is getting feedings through a nasogastric tube. As the person interacting and monitoring your baby at home, you need to establish a relationship as soon as possible.

Infants on oxygen need to be burped more often than other babies. They tend to suck more air into their tummies when eating. Babies who eat in a hurry may not finish a meal or may throw up. Burping also gives your child a chance to rest.

Children with respiratory conditions — such as BPD and cystic fibrosis — who require oxygen often need to be positioned to breathe easier. Most children, like most adults on oxygen, are comfortable in a semi-upright position. Infants can be placed in an infant seat or car seat. An infant's bed can be slightly elevated by putting rolled up blankets under the mattress at the head of the baby's crib. Infants should not be placed on pillows or beanbags. 

Older children can be placed on pillows on their backs, their stomachs or their sides. Repositioning every two to three hours is also important for comfort. If your child is quiet and resting comfortably, take this to be a good position.

Many children who are on oxygen experience times when they require extra oxygen. During feedings, after periods of activity, or when they have a cold, are usually the times when they will experience respiratory difficulty. You should look for the following symptoms:

• Breathing faster than usual
• Nasal flaring
• Making a grunting noise
• Retractions (chest pulling in)
• Poor appetite
• Duskiness, grayish color or bluish color around the lips, gums and eyes
• Irritability/inability to sleep
• Frightened appearance
• Feeling short of breath or tight
• Sleepiness or limpness

Ask your doctor, nurse or health care provider exactly what to do in the event that these symptoms occur. You should not feed your child during an episode of distress unless specifically instructed by your child's doctor.

Your child may be traveling outside of the home while on oxygen. Thinking about potential obstacles will make travel easier for you and your child:

• Make sure your stroller is large enough to carry your child, travel bag and oxygen. Be careful if you place a heavy tank on the back of a stroller, because it may tip over.
• Older children may be too short of breath to carry the oxygen and walk long distances. When walking long distances, you may need a wheelchair.
• Always use a car seat for infants and toddlers. For older children, secure them with a seat belt in the rear of the car.
• Children who are on oxygen may have difficulty breathing in hot or humid weather. Air conditioning will be more comfortable in the summer months. In addition, during hot weather the tanks can become hot, so air conditioning or keeping car windows open is recommended.
• Never store your oxygen tanks in the trunk of the car. Always secure them in the back seat, in an upright position, preferably secured with a seat belt.
• Families who care for children on oxygen are eligible for handicapped parking privileges. Contact your state or local offices for applications. Your child's doctor will need to sign a verification form.
• Always plan for the possibility of needing more oxygen when you travel outside of your home. You may get stuck in traffic or have to wait longer than expected. You can keep extra oxygen in the car.
• During vacation, you will need to coordinate supplies and delivery with your oxygen supply company. Some companies have branches in other states and can arrange delivery to your destination. When traveling on an airplane, you will need to use the airline's oxygen. Contact the airline for its requirements. Plan at least three to four weeks ahead.

Visiting Your Child's Doctor

When you make a doctor's appointment for your child, tell the clinic staff your child is on oxygen. Tell them again when you arrive. The clinic can use their supply of oxygen while you wait and are seen in the clinic.

Children with public aid coverage who do not have any means of transportation are eligible for Medicare transport to and from clinic appointments. Ask your child's social worker for information on how to arrange this service.

A normal breathing pattern draws air through the nose or mouth into the trachea and then the lungs. The lungs take in oxygen from the air when inhaling and eliminate carbon dioxide when exhaling. Breathing may become difficult because:

• There is an obstruction or narrowing in the windpipe or throat.
• Your child has difficulty getting rid of mucus and secretions.
• Your child has been on a ventilator for a long time.

If any of the above occurs, your child may need a tracheostomy to breathe.

What is a Tracheostomy?

A tracheotomy — also called stoma — is a small incision made through the neck and into the trachea. A tracheostomy tube keeps this hole open so air can enter into the trachea and lungs. The tracheostomy tube is commonly referred to as a "trach." The trach is made of plastic and is available in different sizes depending on your child's needs.

The Importance of Humidity

Before entering the lungs, oxygen from the air is warmed and moistened when it passes through the nose and mouth. Humidity also loosens any secretions in the trachea. When a child has a tracheostomy, this does not occur. Therefore, humidity is replaced with a tracheostomy collar or disposable humidity device. Disposable humidity devices should not be used if your child is receiving oxygen.

Your Child's Breathing Rate

Sometimes, it will be necessary to count the number of times your child breathes per minute. This is called the "respiratory rate." To count, you will need a watch or clock with a second hand. Place your hand on your child's chest and when the second hand reaches the 12, begin counting each time your child breathes. Stop counting when the second hand reaches the 12 again. The number you get is your child's respiratory rate.

Infants normally breathe between 32 to 44 times each minute. Children older than age 2 breathe about 20 to 24 times each minute. The rate may vary depending on your child's condition. Talk with your child's doctor about what a normal respiratory rate is for your child. It is normal for your child to breathe slower during sleep and faster with strenuous activity or fevers.

Because children breathe differently with a tracheostomy, they need help getting rid of mucus and secretions. By inserting a small suction catheter into the trach tube, mucus is removed and your child breathes easier.

When you first start using suction, you and your child may be uncomfortable with the procedure. Your child will probably cry or pull away. But, remember, your child needs suctioning to breathe easier. Concentrate on what you are doing rather than how your child is behaving. After time, you will both get used to suctioning and it will become easier.

When your child first gets the tracheostomy, it will be necessary to suction several times during the day and night. After your child becomes comfortable with the trach, suctioning will become less frequent.

Suction only when necessary, not on a schedule, but at least several times a day. Judge the time interval between suctioning by the amount of secretions produced. Our experts recommend that you suction before bedtime, first thing in the morning, before meals and before your child goes outside. If your child has a cold, suctioning should be done more frequently.

By suctioning effectively, you will decrease the chance of respiratory tract infections, such as pneumonia.

Warning Signs

• You can either see or hear mucus bubbling out of the trach.
• Breathing rate is faster or harder than usual.
• Nostrils flare when breathing.
• The skin around the trach sucks in when breathing.
• Your child appears restless or looks frightened and upset.
• Your child's face appears pale or the lips are bluish.
• Your infant is having difficulty sucking on a bottle.

Steps to Suctioning

You will need the following supplies:

• Suction machine
• Saline
• Catheter kit (gloves, catheter, cup for saline)

Follow these steps to ensure proper suctioning:

1. Wash your hands.
2. Turn on the suction machine.
3. Open a suction catheter kit.
4. Pour a small amount of saline into the cup from the suction catheter kit.
5. Put on a clean glove.
6. Pick up the suction catheter from the kit with your gloved hand and attach it to the connecting tube of the suction machine.
7. Suction some saline from the cup to test the suction and to wet the inside of the suction catheter so the secretions will go through the catheter smoothly.
8. Insert about 1 inch of the suction catheter quickly and gently into the trach tube. The length inserted should be approximately the length of the trach tube itself. Do not put your thumb over the catheter vent while you are inserting the catheter.
9. After inserting the suction catheter, cover the catheter vent with your thumb to apply suction. Pull and twist the catheter out slowly. Do not leave the suction catheter in the trach for longer than five to eight seconds.
10. Suction some saline from the suction cup to clear the mucus out of the catheter.
11. If necessary, suction again until the airway is clear and your child can breathe easily. However, let your child rest at least 10 to 15 seconds before repeating the procedure.
12. If your child's secretions are thick and hard to suction, place a few drops of sterile saline from the saline dropper into the trach tube and then suction again.
13. After you finish suctioning the trach, you may also need to suction your child's nose with the catheter if there is a large amount of nasal secretions. Only suction the nose after you have finished suctioning the trach with the catheter.
14. Discard the catheter and glove.
15. Turn off the suction machine.
16. Wash your hands.

After Suctioning

Pay close attention to the odor and color of the trach secretions. If the secretions are foul smelling or thick yellow-green, call your child's doctor. Streaks of blood might also appear in the mucus. If this happens frequently or becomes worse, notify your doctor.

Older children should be encouraged to cough to clear secretions from the trach. Wipe the secretions from the surface of the trach and neck with a tissue. Coughing can help minimize suctioning, so praise your child for an effective cough.

Some infants and children have difficulty removing secretions from the lungs by the normal cleansing mechanisms. In such cases, it is necessary to loosen the mucus by performing percussion and postural drainage. Before discharge, your child's physician will review the techniques for percussion and postural drainage.

Percussion

Percussion is a tapping technique that loosens secretions and causes drainage of mucus from the lungs while your child is in different positions. The procedure involves gentle rhythmic pounding on the chest with cupped hands, manual percussor, or percussion machine.

Your child's doctor will prescribe this procedure if it is needed. Otherwise, it can be used if your child has a cold or increased secretions.

Hand Positioning for Percussion

Bend from the wrist to tap your child's chest so the pounding does not hurt. A loud, hollow sound should be produced by the trapped air between the cupped hand and the chest. A slapping sound indicates that your hand is not cupped enough. Tap only over the rib cage. Avoid the abdomen. If performed properly, percussion is painless.

Postural Drainage

Postural drainage is the positioning of the child so that gravity will help move secretions from the smaller bronchial airways to the trachea. The secretions can then be removed by coughing and suctioning. Please discuss the proper technique with your physician.

While performing postural drainage, you should remove any constricting clothing and make your child as comfortable as possible. To minimize discomfort during the procedure, place a lightweight shirt between your hand and your child's chest. Be sure to suction your child before and after the postural drainage procedure. Do not perform postural drainage immediately after meals; it may cause vomiting.

Cleansing the area around the tracheostomy should be done at least twice a day or more as needed. Cleanse under the cannula and around the stoma with warm soapy water. Rinse the area with a wet cloth and pat dry. Be careful to not get water or soap into the tracheostomy. If this occurs, suction your child immediately.

Cleaning with Hydrogen Peroxide

If the area around the stoma is crusted, appears red or has a foul odor, you may need to use half-strength hydrogen peroxide and water to clean the site.

You will need the following supplies:

• Small paper cup
• Sterile or distilled water
• Hydrogen peroxide
• Cotton swabs

Follow these steps to ensure proper cleansing:

1. Fill a small paper cup half way with hydrogen peroxide. Fill the remainder with sterile or distilled water.
2. Dip two cotton swabs into the solution.
3. Clean around the stoma with the first cotton swab. Clean the phlanges with the second swab. Repeat these steps if necessary, making sure you use a clean swab each time.
4. If your child's physician has prescribed a cream or ointment, apply it after the trach skin care is complete.

If your child has excessive trach secretions, place gauze trach dressing (trach sponges) under the trach to absorb the secretions.

If there is a rash or unusual odor from the tracheostomy site, or if the child's secretions have an abnormal color, call your pediatrician.

Tracheostomy Ties

You will need the following:

• A person to assist you
• Tracheostomy ties or velcro trach ties
• Blunt-end bandage scissors
• Gauze trach dressing (trach sponges)
• Blanket or towel roll
• Warm soapy cloth

Follow these steps:

1. Wash your hands.
2. Before changing the tracheostomy ties, suction your child. Suctioning will remove the mucus and decreases the chances of coughing which may lead to coughing out the trach tube during the procedure.
3. Cut the tracheostomy tie long enough to fit twice around the neck and add 3 to 4 extra inches. Or assemble the Velcro trach ties per package instructions.
4. Place a blanket or towel roll under your child's shoulders. This will extend your child's head backward and allow you access to the tracheostomy ties. Hold your child securely and safely. If your child cooperates, the procedure can be done while your child is sitting up.
5. Have your assistant stabilize the tracheostomy by holding the phlanges securely to the neck.
6. Cut the old tracheostomy ties with blunt-end bandage scissors near the knot. Thread the new ties through the hole in the phlange.
7. If using Velcro ties, remove old ties and thread the new ties through the phalange.
8. While your assistant secures the trach, bring your child slightly forward and remove the old tracheostomy ties. 
9. Cleanse the back of the neck with a warm, soapy cloth. Then rinse and dry thoroughly.
10. Bring the new ties to the back of the neck. Make sure the ties lie flat and are not twisted. Thread the ties through the other phalange hole. Tie one square knot. If using Velcro ties, thread the Velcro through the other side of the trach and secure the Velcro per manufacturer.
11. To make sure the ties are tight enough, you should be able to place only one finger between the ties and the neck. If they are too loose or too tight, adjust and check again. 

Tracheostomy Tube

Tracheostomy tubes are routinely changed — at least once a week — to provide a clean and open airway. The trach should be changed during the day, before meals or one hour after meals, and preferably after chest therapy and suctioning.

You will need the following:

• A person to assist you
• Tracheostomy tube with obturator
• A smaller size tracheostomy tube set
• Blunt-end bandage scissors
• Trach ties or Velcro ties
• Normal saline
• Suction equipment and suction kit
• Ambu bag (attached to oxygen if your child is receiving oxygen)
• Blanket or towel roll

Follow these steps:

1. Wash your hands.
2. Assemble the equipment at the bedside.
3. Open the package containing the tracheostomy tube. Be careful to only touch the phalanges — keeping the tube sterile. Assemble the tracheostomy by inserting the obturator into the trach tube. Thread the trach tie through one of the holes in the phalanges.
4. Sterile saline may assist in inserting the trach tube. Pour a small amount of sterile saline in a clean paper cup or squeeze a small amount of lubricant onto the sterile middle of the suction catheter kit. Dip the end of the new trach tube in the lubricant and place the tube back in its holder.
5. Place your child on his or her back with a blanket or towel roll under the shoulders.
6. Suction.
7. Ask your assistant to hold your child securely.
8. If your child depends on oxygen or mechanical ventilation, provide continuous oxygen or ventilation during the procedure. Keep the ambu bag at the bedside.
9. Ask your assistant to hold the old trach securely to the neck while you remove the old trach ties.
10. Pick up the new trach. When you are ready to insert the new trach, have your assistant pull out the old trach. Quickly insert the new trach into the stoma.
11. Quickly remove the obturator and allow your child to breathe. Administer oxygen/ventilation if your child has this requirement.
12. Secure the trach ties as above.
13. Suction if necessary.
14. Complete the procedure with verbal praise or by hugging your child.

If you are having problems inserting the tube, remember to stay calm. Try again. The tube should slide into place with very little resistance. If you are not able to insert the tube after two attempts, lubricate the tip of the trach tube with saline.

If you are still unsuccessful, have your assistant try to insert the tube. If your assistant is unable to insert the tube, try to insert the smaller size trach tube. If you continue to be unsuccessful, take a clean suction catheter and insert it into the stoma about 1 inch. Be sure the catheter is not attached to the suction machine. Hold the catheter in place and do not cut the catheter. Call for medical assistance.

The catheter will help locate the stoma when medical assistance arrives. Stay with your child. Be prepared, you may need to perform CPR until medical assistance arrives.

A child with a tracheostomy can eat regular foods. However, it is important that your child eats with your supervision. Do not leave your child during meals, or prop him or her with a bottle.

Steps for Feeding

To feed your child safely, follow these tips:

• Suction before eating. If your child can breathe smoothly, he or she will not tire as easily during meals.
• Wash your hands and your child's hands before eating.
• Always have the trach collar or disposable humidity device in place during feedings to provide humidity and extra protection for the trach.
• If your child is an infant, hold him or her while feeding. After feeding, burp your child well and put him or her in an infant seat or on his or her side.
• If you spoon-feed your child, wrap a towel or cotton bib loosely below your child's chin to cover the trach.
• If any liquid drips into the trach, suction your child immediately.
• Unless it is absolutely necessary, do not suction your child for about a half an hour after he or she has eaten. Suctioning may cause vomiting.

Nutrition & Hydration

Because of the tracheostomy, it is very important for your child to eat balanced meals. Because your child spends added energy breathing and clearing secretions, he or she must have extra calories to grow and develop properly. Your child also loses more body fluids with a tracheostomy, so it is very important that he or she gets adequate amounts of liquid. Your child's health care team will work with you to develop nutrition guidelines.

A child with a tracheostomy should bathe in a shallow tub or be sponge-bathed. He or she cannot take showers. Some precautions:

• Do not leave your child alone in the bathtub.
• Do not allow water or suds to get into the trach. If they do, suction immediately.
• Do not use powders or aerosols around a child with a trach. They may enter the trach and cause breathing difficulty.

Shampooing

Wash your child's hair with him or her lying back. Support the back of the neck while you shampoo and rinse. Be careful not to allow water or suds to enter the trach. If this happens, suction immediately.

After bathing or shampooing is a good time to change the trach ties when they are loose and wet.

Dental Care

To help prevent infection, mouth care is especially important. Your child's teeth should be cleaned at least twice a day after the first teeth appear.

Clothing & Bedding

It is not necessary to purchase special clothing or bedding for your child. However, clothes that cover the trach, such as turtlenecks, should not be worn. Necklaces, strings, or fuzzy clothing and bedding should also be avoided. Fibers or beads may get into the trach and make it hard to breathe. If your child is going outside in the cold weather, tie a scarf loosely around his or her neck.

Outdoor Activities

When playing outside, attach a disposable humidity device to protect the trach from the cold air and dust. Do not allow your child to play in or around sand boxes. Older children should not participate in contact sports, such as football. A child with a trach should never go swimming — inside or outside — until the trach has been permanently removed.

Infants

A baby with a tracheostomy also needs to develop neck, stomach and back muscles. This can be helped by placing the child on the stomach with a towel roll under the chest. This will help keep the tracheostomy airway open. It is important to supervise your child when he or she is on is lying on the stomach.

Toy Precautions

Children with a tracheostomy should avoid toys with small pieces. Your child or a playmate may pick up the small pieces and put them into the trach. Also, keep fuzzy stuffed animals away from your child because fibers may enter the trach and cause difficulty with breathing.

Follow the toy manufacturer’s age recommendations.

In the beginning, your child may not be able to talk. The air that leaves your child's lungs goes out the trach and not through the vocal cords. This also means you will be unable to hear your child cry. However, in a short time, your child will be able to make noises and speak around his or her trach.

Some children learn to speak by covering the trach tube periodically with a finger or chin so air passes the trach and reaches the vocal chords to produce sound. A speaking valve — also known as a Passy Muir valve — may be used with a physician’s approval. Once approved, a speech therapist will help with the use of the speaking valve.

Another option is for you and your child to learn sign language. Consult your child's physician or speech therapist. You should also supply older children with pencil and paper, horns, or bells to ease communication strain.

To help develop language skills, it is important to read stories, sing songs, point out names of objects in the environment, play music, and watch television with your child.

Children with a tracheostomy should go home with an apnea monitor/oximeter. It is important that the child be placed on the apnea monitor/oximeter when activity is not being supervised. Many parents use an intercom device for added monitoring. You may also consider purchasing a wrist or foot rattle to hear a signal from your child for your attention.

When sleeping, your child needs humidity from the trach collar. Humidity is important because it helps to thin the secretions and to keep the airway moist. Since it may be necessary to suction your child when he or she is asleep, it is important to periodically check on him or her. Your child may also need to be suctioned more frequently if he or she has a cold.

Our board-certified pediatric sleep medicine specialists are available to provide assessment and recommendations for sleep-related care for children with tracheostomies.

We recommend that children with trachs receive some type of nursing care at home. Before your child is discharged from the hospital, one of our nurse case managers will meet with you to discuss your needs. The case manager is an experienced, registered nurse who arranges for nursing care, equipment, supplies and other services you may need at home.

Nursing Care

Equipment Checklist

Workspace at Home

• An extra trach tube
• One size smaller trach tube
• Obturator (it comes with the trach tube kit)
• Ambu bag
• Suction machine
• Suction catheters
• Saline droppers
• Trach ties and/or Velcro ties
• Bandage scissors

Care & Cleaning of Equipment

1. Wash the equipment with hot, soapy water.
2. Rinse with hot water.
3. Rinse the equipment with a solution of vinegar and water.
4. Air dry.
5. Store the equipment in an airtight container or plastic bag.

Some children with tracheostomies have a limited amount of trach tubes supplied by the insurance company or DME company. In this case, the trach tubes will need to be cleaned and stored for reuse during the month. Please follow the manufacturer’s recommendation for cleaning trach tubes.

Disposable humidity devices may be used for 24 hours. However, if secretions clog the device after coughing, change the device immediately. Throw the old one away. These devices cannot be cleansed for reuse.

Daily and weekly routines for cleaning the trach and equipment will help keep your child healthy.

For daily cleaning:

1. Rinse connecting tubing of the suction machine.
2. Empty and clean suction machine bottle and empty the secretions into the toilet.
3. Clean the trach collar.
4. Wash the nebulization cup.

For weekly cleaning:

1. Discard and replace connecting tubing on the suction machine.
2. Clean the humidity tubing attached to the trach collar.
3. Wash the exterior of the equipment and the plastic covering of your child's bed and work area with an all-purpose cleaner.

Making Saline

You will need the following supplies:

• Drinking water
• Table salt
• Measuring cup
• Measuring spoon
• Two 2-quart pans with lids
• One quart-size jar and lid
• Funnel

Follow these steps:

1. Wash your hands.
2. Wash pans, spoon, funnel, jar and lid in soapy water, and rinse.
3. Fill pan with 1 quart (4 cups) plus 1/4 cup of water.
4. Add 2 level teaspoons of salt to water.
5. Bring to a boil. Cover pan.
6. Boil gently for 10 minutes (start timing after boiling begins).
7. Place bottle, lid and funnel in other pan. Cover with water.
8. Bring to a boil. Cover pan, and boil for 10 minutes.
9. Let both pans cool to room temperature.
10. Remove jar from pan. Do not touch inside of jar.
11. Pour cool saline into jar using funnel.
12. Place lid on jar. Label jar "salt water."

Preventing Problems

To help your child breathe easier, keep him or her away from smoke, strong chemical fumes from cleaning solutions, burning leaves, small fires and baby powder. Also, keep small toys — such as plastic blocks, beads, charms, and game pieces — away from your child. If these enter the trach or airway, they could block the air going into the lungs.

Being Prepared

Children are active and curious, and sometimes problems do occur. The best thing for you to do is be prepared.

When the Tube Falls Out

If the trach tube falls out, don't panic. The stoma does not close completely, so you have time to insert a new tube. Always keep an extra tube near your child. Some parents tape a trach tube set to the child's bed, stroller or humidifier. Always keep one in the car or diaper bag for traveling. If you have a two-story home, consider keeping one set upstairs and one downstairs.

1. Insert a clean tube into the stoma using the obturator.
2. Hold the tube in place with your fingers and pull out the obturator.
3. Replace the ties.

When a clean tube is not available, use the old one and secure it with ties. If the old tube is not usable and there is not a clean tube available, place a hollow item — such as a suction catheter — into the stoma until a new tube can be located. Hold the item in place until you can insert a new trach tube.

Difficulty Breathing

When the tube becomes blocked with mucus, your child will have trouble breathing. You need to watch for these signs:

• Breathing is at a faster rate than usual
• Your child has a restless or frightened look or is pale and sweaty
• The skin on the chest and neck are pulling in

When you notice these signs, suction immediately. If the mucus in the catheter is very thick, put a few drops of sterile saline from a saline dropper into the stoma and suction immediately. The saline might loosen and thin the mucous plug. If you cannot remove the mucus, change the tube. Call your child's doctor if the symptoms continue.

If Your Child Stops Breathing

If your child does not breathe when the trach tube is clear of mucus, begin cardio-pulmonary resuscitation (CPR). Your child's nurse will teach you the procedure and have you practice until you feel comfortable performing it.

When to Call Your Child's Doctor

Call your doctor if your child has any of these symptoms:

• Difficulty breathing after being suctioned
• Temperature higher than 101.5 degrees Fahrenheit
• Color change in the mucus from white to yellow or green
• Foul odor from the secretions
• Redness around the area of the stoma or skin on the neck
• Tube cannot be reinserted when changing the trach tube
• Blood from the tracheostomy site or blood in the secretions

Public law (PL94-142) requires appropriate public education for all children regardless of their special needs. Children with tracheostomies are entitled to special education classes under the "other health impaired" category.

Education Program

Each child must have an individualized education program (IEP) developed by school system personnel, parents and, if appropriate, the child. An educational plan that meets the special needs of your child might include a health aide, physical education plans and transportation. You should contact your local school district to obtain information on the application process. If you need assistance, contact your social worker.

Immunizations

It is important to keep your child’s immunizations up to date. You should keep a record of all immunizations your child receives in the hospital and the doctor’s office. A flu shot may be needed annually for children with chronic disease. Some children also qualify for a Synagis shot, which helps decrease the likelihood of acquiring a virus called RSV. Consult your child's doctor about your child’s special needs.

Traveling & Vacation

Eventually, you will want to travel — even if it is only to your doctor's office or to a friend's house. You should pack a travel bag to take with you.

The travel bag (bag, backpack, duffel bag) should include:

• Suction catheters
• Gloves
• Normal saline droppers
• Tissues
• Scissors
• Extra trach tubes (same size and one size smaller)
• Trach ties/Velcro ties
• Disposable humidity devices
• Bulb syringe
• Portable suction machine
• Oxygen (if needed)
• Apnea monitor/oximeter
• Medicines
• Ambu bag
• Diapers/clothes/wet wipes
• Bottles/food/snacks
• Toys

Parking

Families with tracheostomy patients are eligible for disabled-parking license plates or permits. To obtain the license plates, contact the state office responsible (in Illinois, contact the Secretary of State's Office). You will need a letter from your physician verifying your child's medical condition.

To obtain a permit for parking or information on how to have a handicapped parking place designated near your home, contact your local village, town or city office. Again, you will need a physician's statement verifying your child's medical condition.