Living with Oxygen

Our bodies are fueled in part by the oxygen in the air we breathe. When we breathe it into our lungs the oxygen crosses from the lungs into the blood stream. The blood then takes it to all parts of the body. Our body cells “eat” oxygen and “spit out” carbon dioxide.

This carbon dioxide travels back through the blood stream, crossing from the blood stream into the lungs, where it is breathed out. chILD can get in the way of this process. Some children with chILD have to work harder to breathe. Things like eating, crying and playing can be extra tiring. When children do not have enough oxygen for a short time, it may not harm them. They may have no affects you can see and they may not look different. Sustained low blood oxygen levels, like below 88 percent, can hurt the body. The heart gets larger than normal because it has to work harder to keep oxygen in the body. Some children with chILD need extra oxygen to help them breathe better, grow, and prevent heart strain.

Oxygen is a medicine. If your child needs extra oxygen, the doctor will prescribe the lowest amount that can be used safely. Keeping blood oxygen saturation levels (“sats”) above 92 percent helps ensure that the body has the oxygen it needs. Children with pulmonary hypertension need their blood oxygen levels kept at 95 percent or higher. Some children only use oxygen when they sleep or exert themselves. Others use it all the time. Sometimes the amount of oxygen needed changes as the lungs change.

Living with oxygen can be a challenge. However, with a little planning and education, you can learn to tackle each hurdle head on and help your child lead an active, full life on oxygen. Explore the links below to find out more about living with oxygen. If you can’t find answers here, they can often be found by asking other families how they cope in our patient forum.

There are a few options available for oxygen sources to use in your home. Your chILD’s oxygen needs, your insurance provider, and local availability will determine which you will have available. Oftentimes, you will be supplied with a concentrator or liquid oxygen system, and will also be given oxygen tanks for emergencies and travel.
Oxygen concentrators are mostly electric and plug into a wall outlet, though there are some smaller portable oxygen concentrators (POCs) now on the market (Inogen One, Sequal Eclipse, etc.). These can be useful for travel. Oxygen concentrators pull in air from the room, separate the oxygen in the air from other gases, and give almost pure oxygen to your child (leaving plenty for the room). Some concentrators are large (about the size of a kitchen trashcan) and stay put, though they can be moved. In case of power failure, a backup oxygen tank may be needed.
Oxygen tanks hold oxygen in gas form under high pressure. They come in many sizes. Large tanks stay put and can be used in place of an oxygen concentrator. Small tanks are for travel. Small tanks often need a key to open them. It would be wise to have many keys. Attach one to the tank or its holder. Put a key in your diaper bag, on your key ring, or in your car. Because of the high-pressure contents, a tank becomes a missile if the neck is broken or cracked. Oxygen tanks should be stored in their holders or lying flat. When driving with oxygen, secure the tanks on the floorboard. Don’t let them roll around. Don’t store them in the trunk. Your DME vendor can tell you how long your full tank will last at varied flow rates.
Liquid oxygen systems are handy but costly. You can refill small, lightweight liquid oxygen tanks from a big tank kept in your home. Filling them is easy, though care must be taken to prevent freeze burns since liquid oxygen is stored in a state of extreme cold. Liquid oxygen may not last as long as oxygen in a tank because it leaks out, little by little, as a vapor. Liquid oxygen is not available in all areas.

Unfortunately, most of the time you do not have much of a choice in which cannulas or masks that are delivered from your Durable Medical Equipment (DME) Provider. It is important to know that there are several sizes of infant and pediatric masks and cannulas available and one size does not fit all.

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    • For the cannula, the prongs should be spaced so they comfortably fit into the nostrils. If they are too wide, too small or are really long for your child’s face, ask your DME for samples of other sizes. Oftentimes, the cannulas will need to be secured to the face using Tendergrips, Tegaderm, or other tapes. This is another item that you may have to experiment with. If you need ideas, the parent forum is a good place to post questions.

 

 

 

 

  • Masks should be comfortable and cover the nose and the mouth and have very Grant-BT-300x225few gaps around the sides of the face.
    • If your child is using a mask, your oxygen flow will need to be much higher than the cannula to make sure the volume in the mask is replaced with each breath. If the flow is too low, the child may “rebreathe” their exhaled air which contains a higher than normal carbon dioxide level.

Securing the Cannula

For most infants and toddlers, the cannula will need to be secured to the child’s face until they get used to wearing it and will leave it in place. There are many ways to secure the cannula and it may take a few tries to find the one that works best for your child. Your doctor or DME vendor can give you Tendergrips, various types of tape (tegaderm, duoderm, hyptape, etc.), and/or skin protectant products to prevent discomfort and skin breakdown on the cheeks. If you want helpful hints on how to secure the cannula, we encourage you to ask other parents in our forums.

Hytape. Hy-Tape®’s zinc oxide based adhesive formula is soothing to delicate skin. Tape removes with minimum trauma to the skin and reduces the chance of skin tears and tape burns. Hy-Tape®’s protective nature is perfect for extended-wear use. You can request FREE samples from the Hy-Tape website.

Tender Grips. A unique skin fixation system designed to hold the cannula head tubing and face-piece in position. It is easy to apply, allows the skin to breathe, holds securely and leaves the fixed object clean without messy residues.

“Sat” Monitors

pulse-ox-1024x585An oxygen saturation (“sat”) monitor (pulse oximetry) needs a doctor’s prescription. A “sat” or oximeter probe is put somewhere on the hand or foot … often a toe or finger. The monitor alarms when the blood oxygen level or heart rate drops. “Sat” monitors can be used all the time or for quick checks. They can record use and alarms and those records can be sent to your doctor. These are useful tools to check to see your child is receiving enough oxygen. However, “Sat” monitors alarm when the blood oxygen level or heart rate drops, but they also alarm when they have lost their signal (like if the probe is moved).

Posey pulse oximeter probe wraps secure many styles of flexible optical transducers and probe sensors without adhesive tape. Poseys are also great for securing oxygen tubing away from tiny grabbing hands of infants.

Some doctors are hesitant to prescribe saturation monitors because they feel full time monitoring causes more anxiety with the alarms than it actually helps. It is true that these monitors can falsely alarm when the child moves around if contact is lost with the probe for brief periods. However, many parents feel a sense of comfort having a pulse oximetry probe for spot checks. As a result, you may need to discuss this with your physician to see if he/she will provide a prescription.

Suggested oxygen supplies to request from your DME

flow-penIt is often difficult to check for oxygen leaks in the tubing and to make sure your child is receiving all of the oxygen that is leaving the machine. The Litermeter is a convenient pocket-size flow indicator (aka ‘flow pen’) designed to validate flow rates of compressors, regulators, and flow meters. It is available in three (3) flow rate ranges 0-2.5 LPM, 0-8 LPM and 6-15 LPM. If your DME does not provide these, they can be found online and can usually be purchased for less than $10.

  • These are extremely handy to have if you are using a humidifier or are using long tuning to ensure you have no major leaks and your child is getting adequate flow.

 

swivel-connectors

When your child is connected to tubing longer than a few feet, a swivel connector is highly recommended. Reliable Oxygen Tubing Connectors swivel to reduce snagging and tangling of tubing and increase patient comfort and mobility.

 

 

clips

 

Security Clips may be used to attach the extension tubing to bedding and reduce the annoying tugging and pulling of the patient’s cannula. (Salter part number 1220)

 

 

Most people who need oxygen supplementation use nasal cannulas to deliver the oxygen from the source to the nose. These are made of soft, light plastic tubing. They can be used with oxygen flows up to 6-8 liters per minute. Cannulas give oxygen even during eating, drinking, and facial/airway care. One end of the cannula connects to the oxygen source. The other end has two curved prongs that fit just inside the nostrils. There are many sizes of cannulas. Make sure that you request an infant or pediatric size cannula that fits your child well. If the prongs are too narrow or too wide they can irritate the child, which could cause them to pull off their cannula and in some cases cause sores around the base of the nose.

Other Oxygen Delivery Methods

Some patients need other support to help them breathe. Not all patients will require these methods.

Positive Airway Pressure Devices

CPAPCPAP stands for Continuous Positive Airway Pressure. With CPAP, a machine gives a constant amount of air (with oxygen, if needed) to the child using a face or nose mask. The amount of air given can change based on the child’s needs and comfort.

BiPAP stands for BiLevel Positive Airway Pressure. BiPAP is like CPAP in that a machine gives a certain amount of air (with oxygen, if needed) to the child using a face or nose mask. With BiPAP, though, the amount of air is higher when the child breathes in and lower when the child breathes out. Also, BiPAP machines can give a set breath rate, beyond the extra help given when the child breathes on his or her own.

Some kids use CPAP or BiPAP just during sleep. Some kids use CPAP or BiPAP during sleep and while awake … any time they feel like they need it.

Yaacob-GPTracheostomies

A tracheostomy is a short breathing tube that goes from the outside of the neck, just below the vocal cords, to the inside of the trachea (or windpipe). Only a few children with chILD need a tracheostomy. Tracheostomies are often done if a child needs long-term mechanical ventilation, if the upper airway is blocked, or if handling extra lung mucus is a problem. A pediatric surgeon or an ear, nose, and throat (ENT or otolaryngology) specialist does the surgery. The hospital stay may last 2-3 weeks or more. While there, you will be taught how to manage the tracheostomy, handle emergencies, change the tracheostomy tube and ties, suction and clean the tracheostomy tube, and do CPR (though ALL parents should learn CPR).

Children with tracheostomies cannot cry aloud or talk since the tube bypasses the vocal cords. Sometimes they can use a speaking valve to make normal sounds. Children with tracheostomies need their air to be warm, moist and filtered since the tube bypasses the upper airway. Your child’s cough will not work as well with a tracheostomy tube, so you will suction the tube to remove lung mucus. If your child needs a tracheostomy, the DME vendor will give you tracheostomy supplies; a warm, moist, filtered air source; and a suction machine and supplies.

jackson-for-vat-study1Ventilators

When kids with chILD need extra help breathing, even beyond what CPAP or BiPAP can give, a ventilator may help. As with tracheostomies, very few kids with chILD need this kind of help at home. Ventilators are machines that can give either a little extra breathing help or do all of the breathing for you.

The machine gives this breathing help using either a face or nose mask or tracheostomy tube. Of course, the more support a machine gives, the harder it is to learn how to use it. Your health care team and DME vendor will teach you how to use the ventilator and its supplies.

Yes, you can travel. Airplane travel can often increase oxygen needs and some chILD patients should not travel by plane. You should discuss this with your pulmonologist.

To download information, select TravelingwithOxygen

For the most current list of airline approved oxygen concentrators and other information, click here.

More specific information about traveling with oxygen and chILD will be posted soon.

Caution: If a fire occurs in the home, oxygen will cause the fire to burn more easily and spread quickly! There should be no smoking, open flames, electric equipment, or sparks within 10 feet of the oxygen source and delivery device. Always keep a fire extinguisher handy. Make sure every person knows how to use it.

 More Information

Click Thorax-2005-Balfour-Lynn-76-81 to download the journal article Home Oxygen for Children: Who, How, and When which provides a review of the specific requirements of home oxygen therapy in children.