One mom shared that to keep from tripping over the long oxygen tubes running from the concentrator in an upstairs bedroom to her living room she used cable concealers and multiple tubes.
We were very excited about this idea, and my husband immediately ran out to a home improvement store and bought a kit.
Another method someone showed me for dealing with the great oxygen tube tangle problem is to use a pacifier clip to hold the oxygen tube at a loop at your belt buckle like this:
She also showed me how to snake the tubing down his outfit so that it wouldn’t get caught and accidentally strangle him.
While we were there a nurse told us about a nasal gel we could put on his nose to keep it from getting too dried out. We also discovered that having a humidifier on his oxygen line really helped with his comfort.
We asked if we could take home the bottle they had used in the hospital to add to his line at home. Unfortunately, Benny was nearly drowned when my husband accidentally tipped the water over into his oxygen line.
After that we decided to take it off until we could get a proper system. During the drowning incident we also decided to come up with a better system for keeping his nasal cannula on. My sister Josephine was visiting, and helped me to modify some of his knit hats so that we could tie the tubes up over his ears and then cinch it under his chin. This had the effect of keeping the nasal cannula in place and the hat on at the same time. It was also easy to remove, so that if there were ever another incident where we needed to remove the cannula quickly we could.
I happen to live by a yarn shop, and Josephine stopped by to see if she could find a good material to use. The shop owner helped her select a yarn that was not too stretchy, so that it would stay in place well, and a yarn needle.
Sewing the yarn onto the hats is really simple and only takes about a minute to do once you have a yarn needle and yarn. We shot a little video to show how, but the files corrupted somehow, so I’ll have to reshoot it and post it later. In the meantime, here are some pictures with directions on how to create your own cannula holding hat:
We also made another discovery. He happened to be wearing a pair of snap down footy pajamas the day he needed to go the hospital. We discovered that in the snappy pjs, he was able to remain clothed despite having tons of wires and tubes running all over him for monitoring. This discovery came in handy later when he had heart surgery. We stocked up on snap and button down pajamas beforehand, as well as leg warmers. It's silly little things like this that can make a hospital stay so much more comfortable.
With all of these tricks, I quickly became a pro at keeping Benny oxygenated in style and comfort. Still, it was a big relief when he finally started keeping his levels up on his own. How easy life seemed without all of the tubes and tanks and machines that came with the oxygen.
Recently we got a call that Benny’s sleep study had shown his oxygen saturations levels dropping below 90 over half of the time. Our doctor recommended putting him back on oxygen full time for a month.
I was devastated. We had all enjoyed the freedom without oxygen and the idea of having to do it all again seemed like torture.
Today is the first day I’m going to leave my house with Benny since having to put him back on oxygen. I am bracing myself for it as I had really been enjoying just having a baby. A cute, healthy-looking baby. A baby whose health condition I didn’t have to explain if I didn’t feel like it. A baby who came just with a diaper bag and a car seat, not all of the normal baby stuff plus a backpack, tanks, tubes and all the various oxygen tank accessories.
This was one of the hardest blog posts I’ve written because I really wanted to be cheerful and upbeat about having a baby on oxygen, but I don’t feel that way. Having any kind of baby is hard. Having a sick baby just sucks. It doesn’t mean I love Benny any less because he has health problems, it just means that sometimes I have days where I just don’t want to go outside. I don’t want to explain to the kind, curious strangers that no, my baby wasn’t a preemie, that he has Down syndrome and is recovering from a heart defect and that’s why he’s on oxygen.
But he does and they will, and maybe my going outside with my baby and his oxygen tank will help somebody else feel like it’s okay too. Maybe my writing this post will help other parents who are going through this to know that they’re not alone, and that it is doable even if it does suck.
I hope so. Please let me know if you have any suggestions for parents who have a baby on oxygen that I didn't include here, and if you know parents who could use this information do share this with them. Thank you!