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The staff at the University of Chicago Medicine Comer Children’s Hospital realizes that caring for a child with a tracheostomy is not an easy task. You will probably have many questions once your child goes home.
While this information does not replace the answers you will receive from physicians, nurses and other health care professionals, it will provide helpful information concerning the more common issues and concerns of parents.
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:
If any of the above occurs, your child may need a tracheostomy to breathe.
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.
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.
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.
You will need the following supplies:
Follow these steps to ensure proper 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 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.
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 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.
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:
Follow these steps to ensure proper cleansing:
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.
You will need the following:
Follow these steps:
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:
Follow these steps:
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.
To feed your child safely, follow these tips:
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:
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.
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.
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.
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.
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.
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.
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:
For weekly cleaning:
You will need the following supplies:
Follow these steps:
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.
Children are active and curious, and sometimes problems do occur. The best thing for you to do is be prepared.
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.
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.
When the tube becomes blocked with mucus, your child will have trouble breathing. You need to watch for these signs:
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 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.
Call your doctor if your child has any of these symptoms:
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.
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.
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.
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:
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.