Caring for Your Child on Oxygen

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

The type of system your child gets depends on the amount of oxygen needed, what your insurance company will provide and what activities will occur outside your home. Work with your case manager and home equipment provider to determine what will work best for your child.

Compressed Oxygen Cylinders

Green tanks, usually large tanks or "H tanks," are delivered to your house and must be secured in a safe corner of a room. Portable smaller units called "E" or "D" tanks are used for transport and will also be delivered. A key is required to turn the tank on and off. The portable tanks must be replaced when empty. Therefore, your family must plan ahead for trips outside of the home.

Oxygen Concentrators

These devices concentrate oxygen from the air and deliver it to your child. This is not portable and requires electricity to work. Portable E tanks are also delivered for transport and may be used for backup in case of power failure. Oxygen concentrators are often used for individuals who are on oxygen only at night, but they can be used 24 hours a day.

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

Oxygen supply companies usually charge a monthly rental fee for the system you use. If an oxygen concentrator is to be used for a long period of time, it may be purchased by your insurance company.

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

Apnea Monitor

Often infants and young children are placed on an apnea monitor while on oxygen. This is usually a precaution. If your child is in distress or stops breathing, the monitor will alert you. This is usually not necessary once your child is old enough to communicate. Ask your doctor whether you need this device.

Baby Monitor

It is usually helpful to have a baby monitor to use in your home to alert you to your child's needs. These can be purchased at your local baby stores or department stores. If your child is on an apnea monitor, a baby monitor does not replace it. It is an additional item that is helpful.

Create Teaching Sessions

Set up teaching sessions with your child's nurse and the home equipment supply company. You should have at least two people as back-ups in case you are ill, out for the day/evening or are planning to return to work.

Make sure that you, your back-ups and any additional caregivers know and understand the following information:

• 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.