Christine wants parents to know that although going home on oxygen can seem daunting at first, it can be done! Her twin girls, Maja and Alexis, are former 24 weekers who were discharged home on oxygen.

Maja and Alexis, happy at home on their O2.

The first tips Christine has for parents are about programs and services that can offer support. If your babies are on oxygen, you can apply for a temporary disabled parking permit on the Government of Ontario website.  You should also investigate applying for the Disability Tax Credit and the Child Disability Benefit.

Depending on where you live, your Community Care Access Centre (CCAC) may be able to offer support or services. Ask about your CCAC’s Medically Fragile/Technologically Dependent Program; if you are deemed eligible you can receive funds for assistance and respite.  In some areas CCACs are offering access to Rapid Response Nurses to help with medically complex children.  Don’t be shy about asking about all available services at intake; it’s far better to clarify what’s available at the beginning than to find out about helpful services months later!  

For children with multiple health issues, it would also be worth investigating the Assistance for Children with Severe Disabilities Program through the Ministry of Children and Youth Services. The application is long but it entitles you to monthly payments to help with the cost of equipment or transportation to appointments.  Telehealth Ontario (1-866-797-0000) is also a useful resource.

When preparing and organizing your home, Christine recommends the following:

• Use the full 50 feet of extension tubing to allow you to maximize movement around the house.
• Change the extension tubing every 6 months
• Depending on what level of oxygen support your baby needs, you may be using an oxygen concentrator. The concentrator for low flow produces a lot of heat so place it away from the wall (turn it backwards so the vent is facing out if needed)
• For two-storey homes, advocate for two concentrators – one for upstairs, one for downstairs
• Change nasal prongs weekly, or more frequently if baby is congested or spits up
• Have back-up oxygen tanks on hand in case of power failure. Always ensure that a key is on hand to open the tank in case of an emergency and that the regulator is attached

Low flow concentrator and back-up tank

Christine really encourages parents to get out and about with their babies. The oxygen doesn’t need to be a barrier! All it takes is a little planning and preparation.  Christine suggests:

• Always make sure that the portable tank is open
• Double and triple check to ensure that tubing remains connected and that oxygen is set to the correct amount (it can move around in transport)
• Carry extra tape, scissors, tubing and sensors in the diaper bag
• Bring the power cord for the saturation monitor
• Always have a spare portable oxygen tank in the car, on hand, in case of emergencies

Mom & babies on the go!

Christine also has some helpful info for parents who are anxious about bathing their babies. Remember that nasal prongs can get wet. Use your extension tubing to run from the concentrator to the tub, and closely monitor your baby’s colour while the saturation monitor is off.

Bathing beauty!

And how do you keep those pesky saturation probes on? Christine suggests double-taping them to your baby’s foot, wrapping with a posey, and reinforcing with socks or soft baby shoes (like Robeez).  As for sleepers, just as you may have done in the NICU, choose sleepers with buttons or snaps rather than zippers.

Other parents have  mentioned that oxygen suppliers have lots of knowledge to share, and Christine notes they are also the people you should contact if you have any issues with equipment. In cases of medical emergency, always head for your closest ER.

To Christine, on behalf of all those parents who will benefit from this great information you provided, thank you! To Maja and Alexis, thank *you* for being the sweetest possible spokesbabies for infants on oxygen.

If you have questions, tips or thoughts to share, please feel free to add them in the comments!

The post Tips for babies going home on oxygen appeared first on Your Health Matters.