Good to know that Major Medical Supply is a good alternative option, thanks for sharing.
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Hi, I know this is a little old but my 1 year old has been on oxygen for the last 4 months. We had her sleeping in a baby lounger so she didn't roll around and mess with it for the first couple of months The one we used was the "daydreamer". Now that she's older and we've moved her to her crib it's been a nightmare I so paranoid that she will get wrapped up in it that I usually just leave it off if she messes with it to much.
I live in Denver too and agree that Apria is really bad. If you all have found a good support group i would really appreciate it. We are supposed to start cpap soon which will be a whole other can of worms. I'm so happy to have stumbled on this post! My little 4 month old also has Down syndrome. He has pulmonary hypertension secondary to bad sleep apnea. For at least some period of time. I've been feeling so overwhelmed about how I'm going to deal.
Leaving the house feels like such a burden, I'm worried we won't be able to do all the things we were able to do before. During our first trip out we got quite a few comments from I'm sure were well-meaning strangers about my "sick baby". Your post has given me some ideasbut seriously I appreciate someone validating my feelings that "this kinda sucks I'm so glad that this post helped you, thank you for your comment. I hope it has gotten easier for you. Know that you are not alone.
Between nexcare tape and an O2 kid lid, so far we have been able to keep the cannula on my 12 week old with sleep apnea. This morning I woke up to him having the cannula around his neck and he managed to get his arms out of his swaddle sack. I don't think we are going to be able to swaddle much longer.
Do you have any suggestions to stop him from pulling the cannula off? I'm dreading his hands being free at night! Hi Dani, I imagine you've found a solution by now, but it is definitely a tricky thing keeping oxygen on at night, and it's scary when the baby gets tangled up in their tubes.
I ran the tube down the front instead of the back so if he did get the cannula off he wouldn't get strangled. Putting socks on little hands can help prevent the cannula from getting pulled out, but it is a challenge. Did you find any solutions that worked? After we couldn't swaddle anymore, we started using a zippadee zip. With his hands covered, he has a harder time pulling it out. I had to sew a buttonhole in the bottom of the zippadee zip so it could run down and come out the bottom. When he started sitting and standing in the crib, he ended up wrapping the tubing around his neck even when the cannula stayed in his nose.
Is Benny still on oxygen? I'm so glad I found this blog! We live in Denver too and my 7. He has trachamalcia and has had o2 since 8 weeks.
I feel so lost sometimes about what to do and wish there were support groups locally for his condition or just for babies wearing o2.
Maybe I missed it seeing it in other posts, but if there's something, I'd love to know. He is still swaddled fully so he won't pull the canula off, but keeps waking up due to wanting to roll over.
I'm at a loss what to do. There is not a support group for families of babies and children on oxygen that I know of, but that's a great idea! I'm moving from Colorado myself, so I encourage you to start a group yourself.
You could set it up on Facebook or just create an email account and then ask your medical providers to share the info with other families. If you decide to start one and let me know I can help spread the word. As far as your infant not liking the swaddling, it's getting really warm for that. Have you tried just putting socks over his hands at night so he can still move around freely without taking off the cannula?
It's a challenging problem and I wish there was a better system for babies and toddlers on oxygen. Hi Molly, I was reading this great blog and wanted to introduce myself since it seems like I'm having a lot of the same struggles you are.
He's almost three months old, and I'm having the same issues with swaddling. He's pulling his arms out of the sack and somehow removing his cannula at night.
Have you found anything that works? I'm in Colorado Springs. Hi Rachel, We have had the best luck with the Halo swaddle sacks so far. On occasion my 7 month old can get his arms out, but it is rare.
Our pediatrician wants us to wean from swaddling, and she recommended the zipadee zip. She thought the design might limit his ability to pull the oxygen off while still allowing him some movement. We haven't tried it yet, but plan to soon. Hi Molly - I'm wondering if you're still swaddling your son plus if he's still on the oxygen.
I'd love to be in a support group or email chain for other parents of babies on O2. My email is alanaiturbide yahoo. I enjoyed your post. Try ultra thin duoderm under the tegaderm. It's less harsh on the skin than just tegaderm.
I just ordered the sensitive grips for my daughters cannula. I was hoping they would be less harsh on her skin but sounds like it may not the case from your blog. Thank you so much for doing this post. It is very encouraging to know that we aren't alone.
My son is 5. He was on full time oxygen from 2 months to 4 months, and now is on it during naps and sleep. His sleep recently has been awful because he hates still being swaddled, but I haven't found a way to get him to leave the cannula alone. Our swaddle is the best I've found, though - Anna and Eve https: Hopefully that helps someone. We also use the 3M Nexcare tape - quite an improvement as to the impact on his skin from the other medical tapes.
I'll try the sock idea on his hands, but he already gets easily overheated. Do you have any other ideas so he can't pull the cannula off? During naps, he even pulls it off while sleeping. Hi Alana, My almost 9 month old is on oxygen for naps and bedtime for sleep apnea and tracheobronchomalacia. I dreaded the day we had to stop swaddling him. I have found that the Zippadee Zips keep him from pulling off his oxygen.
They are a little pricey in my opinion, but that has been our solution to losing the swaddle. My only complaint is that they zip from the bottom to the top. If the zipped top to bottom, I would probably run the tubing inside down his back.
He keeps the oxygen on pretty well, but my concern now is that he will wrap the tubing around his neck with all of the rolling he does. If you want, you can reach out to me through my blog. It isn't up-to-date in a blogging sense, but I can definitely be reached through it.
Thank you so much for posting this blog! I'm in tears from several days of replacing cannula tape every few hours as my baby keeps ripping it off in frustration. I am going to go make those hats right now! I hope that your baby is doing much better now and is off oxygen. Hi Dani - I bought a Zippadee zip, but as you said, they don't zip downward, and my little guy wears a pulse oximeter at night on his toe.
I'm going to try to switch the zipper around for now. I did contact the company, and they are working on a Zippadee zip that zips down diagonally. I was told it should come out in a few weeks fingers crossed! I'm so worried about taking him out of the swaddle and him pulling the O2 off can't use the zz until I get the zipper direction fixed But, the swaddle is causing other issues of him constantly keeping his arms and shoulders back - even when he's not swaddled!
So, we have to do it as soon as possible. If you think of any other solutions, please let me know! That would be wonderful if the company comes out with a zipper that goes down. I considered making one, but I have been short on crafting time since going back to work. Just this past Friday night my fear came true. I came home from working night shift to find my little guy with the oxygen tubing wrapped around his neck 4 times.
I'm just thankful he was okay. Let me know if you see the new style zipadeezip released! I also have a child with oxygen supply and I share the same problems with the adhesive tapes.. Here's an update about my now 7. He had another sleep study but still has central apnea and some, but much improved, obstructive , plus he is still desatting. So, we'll stay on the oxygen at least until he's one year old. We are no longer swaddling - we actually are going to physical therapy due to some developmental issues from swaddling too long, mostly involving him keeping his hands at his side as if he were swaddled even when he should have them out.
He looks like a seal on tummy time! The zippadee zips are working well, although my mother in law sewed a new zipper that zips downward on each one so we could take the pulse ox cord out the bottom rather than up through the neck.
He still does knock the cannula out with his little arm stubs, but it is much better than having his fingers free. He still sleeps next to me in a bassinet but is just about too big. I'm hesitant to transition him to a crib because I don't want him rolling around and getting tangled in either the cannula tubing or the pulse ox cord.
Also, he is jolting himself awake every hour to hour and a half from the apnea and I have to either feed him or give him a pacifier to go back to sleep every time. I'd love to hear what others have done for this issue. I'm not functioning well. We still use the 3M sensitive skin tape every night.
It occasionally comes off or. Evokes loose, but it beats the sore skin and harsh results of the stronger tape removal each day. Thanks again for sharing. It's good to know there is a community out there dealing with this challenge for our little ones. Hi, First, Benny is a beautiful boy! And 2nd- thanks for being so honest. I came across this researching ideas for keeping the cannula IN the nose as we are really struggling with this.
I will try that Tegaderm Film! I have 2 suggestions: Will go into detail below. My son went home from the NICU on oxygen back when he was 3 months old and it was scary then but we could still swaddle and he slept nearby.
Now at 14 months he has just gone back on oxygen for sleep apneas and desatting which I was devastated about. I feel your frustration as most people don't get how hard just the basics are, like putting him down for a nap.
He also has an older sister and twin sister, thankfully her breathing is fine but it's exhausting just getting through the day. Anyway I do have 1 tip for the sensitive skin. I use a dry coconut oil spray that I got for my dry skin but tried it for him. I spray a little on my fingers, rub it over the tape, then spray again on fingers and rub into his skin as I peel the tape back. He doesn't seem to get upset by this and his skin is less red.
Although I was going to have to go back to tender grips AND tape as he is older and strong and can pull everything right off. We have tried 5 diff. Having and older active baby with plastic tubing in his crib is terrifying and the sleep clinic Drs. I watch the monitor and pulse ox numbers obsessively. My other tip isn't about the tubing but everyone using oxygen should get this, the Owlet pulse ox and heart rate monitor. It's pricey but amazing, I could not sleep until I had this and have checked it at my Dr office against their pulse ox and it is accurate.
It has saved my son already 3 times by alarming when his oxygen went below We would have had no idea but the alarm sounded, we had to rub his back hard and crank up the oxygen for a few minutes but he came back up. I now can watch the numbers from the Owlet app on my phone and know as soon as it hits 93 or lower to go in and check. And every time he has pulled the cannula out and its just above his nose. It makes me have some peace and able to sleep small amounts at a time.
This company seems new maybe 3 or so years old but I wrote them and said every NICU should be sending parents home with this instead of us stressing and watching to see if they turn blue which my son did a few times when he first came home, ER visits and back into NICU- terrible thing to see.
We are really looking for a better tape or something to secure the cannula at this point and hoping he comes off oxygen at the next sleep study in a month or so.
Good luck to all dealing out there! I have had our Owlet since our little guy was 7 weeks and we found out about his sleep apnea and need for oxygen while sleeping. I would not get any sleep without it! I see your little one is 14 months now. Do you find that the owlet is starting to get small? My son just turned a year old, and I am concerned he is going to grow out of it soon.
There is a new monitor coming out called the Neebo that has a wrist strap that they say should fit up to an average 5 year old. I'm nervous to order it though because it hasn't been on the market yet.
We have another sleep study in March, and if he doesn't need the oxygen anymore, I might be ok without him wearing it, but if he does still need oxygen, I really feel I have to have a monitor. Hi Dani, Sorry thats a long time dealing with oxygen! I ordered to size 4 sock from Owlet and it works well, even maybe a little big so we also put him in a sleep sack or cut a hole in the side of the footie PJs when its cold: Let us know if you try the new monitor, although I am really happy with Owlet and will prob.
Good luck, these bigger guys make keeping the cannula on such a battle! Hi McClain, We have actually been using the size 4 sock for a few months now! How big is your son? At his last appointment a month ago, my little guy was 21 lbs. It certainly is difficult to keep the cannula on as they get bigger! You mention using a bunch of different tapes and securing near his ears. You may already do this, but how about tape on his cheeks right near his nostrils?
We use the blue 3M nexcare sensitive tape, and we have to put a piece on each side of his nose, and near each ear. He wears a zippadee-zip too. He does occasionally mange to get the cannula off still, but I find he has a harder time finding a place to grab onto with the tape in those spots. I did end up placing a pre-order for the monitor just a few minutes ago. They aren't supposed to start shipping until April though. This is the link: Hi Dani, How is your son doing?
I wanted to let you know owlet just came out with a new sock that is open over the toes, -and can be used on either foot and fits so much better. Walker is now over 23lbs and it's worked well. And exciting news in our home- as of today his pulmonologist said he's ready to be off oxygen! I feel like a little kid on Christmas morning I've been so happy and excited. But I also feel much better going into tonight with the Owlet on! They said he still has sleep apnea and will hopefully grow out of it but can recover well.
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