Baby on Oxygen

[jennilouwho]

Hello!

My 4 month old has obstructive sleep apnea. He had surgery a few days ago to try to help with it, but so far, I'm still noticing apnea issues. We won't know for sure though until our follow up visit in a few weeks. He's been on oxygen at night for most of his life so far. I've been reading online that most children outgrow his specific issue by age 2. If he has to be on oxygen that long, how do I keep it on him at night once he can move around? He's currently swaddled because otherwise he rips it right off. I'm worried about him rolling and strangling himself and overall just not keeping it in. Does anyone have any tips if their child had to be on oxygen?

 

[alizesmom]

Try putting it on as usual (mask or nasal cannula?) then run the tubing through his pajamas or use a velcro strap to wrap it to his body. HTH. Karen

 

[jennilouwho]

Good ideas! Thank you! I appreciate any input. It's a nasal cannula. I really have no idea how we're going to keep him from ripping it off though once we can't swaddle him, but at least you've helped me figure out how to keep him safe with it. Thanks!

 

[LauraVV]

I think they're grabby when they're little. Our girlie had gotten better with time. You can run the cannula tubing up the back of his PJs and have only the cannula where he can find it.

I'd make sure you have a great pulmo/sleep specialist too. Are they sure it's obstructive and not central apnea?

 

[jennilouwho]

Hi Laura,

He had a sleep study done and some scoping done and they said it was obstructive. He had a little of his uvula removed and some of the flappy stuff over the vocal cords removed. However, his air passages are very narrow and may be having something to do with this too. We have follow up in a few weeks. We've been taking him to a pretty high esteemed children's hospital, so we feel pretty confident in their diagnosis, but I'm a little bummed that the surgery didn't seem to fix the problem.

 

[LauraVV]

Sometimes surgery can make the apnea worse if you have a floppy airway and the tonsils, etc., are holding the airway open.

There's a really good place for apnea and non-invasive vent support in Wisconsin if you're anywhere close. If you are, you can PM me.

Have you checked out Our-Kids?

www.our-kids.org

 

[jennilouwho]

I actually grew up in Wisconsin, but live in Utah now. I don't think it's gotten worse. It appeared our first night in the hospital after the surgery that it was tons better, but whenever he gets his oxygen ripped off in the night I wake up to him choking and gasping like he was before. We'll be doing another sleep study in a few weeks to see what's up.

 

[jennilouwho]

Oh, by the way, I haven't seen that website. I'll check it out

 

[ireland_nicole]

If you only just had the surgery, there is still a lot of swelling; so don't assume that the surgery hasn't worked yet. You're probably sleep deprived too, and of course you worry, but don't worry about months from now yet, they'll come soon enough. FTR, I am saying this in a compassionate, supportive tone w/ a And I say this as a mom who has been around this block for a while. Just give it a couple of weeks and you may see a lot more improvement

 

[jennilouwho]

If you only just had the surgery, there is still a lot of swelling; so don't assume that the surgery hasn't worked yet. You're probably sleep deprived too, and of course you worry, but don't worry about months from now yet, they'll come soon enough. FTR, I am saying this in a compassionate, supportive tone w/ a And I say this as a mom who has been around this block for a while. Just give it a couple of weeks and you may see a lot more improvement

Yes, thank you. I do appreciate that. I'm hopeful that it's at least improved. He still sounds pretty bad, but it may just be noises and hopefully his oxygen levels have improved.

 

[scottsod]

hi

we never had this issue with our kids we had alot of others
any my wife got this crib matterss with a fan and filter suposed to help with sids and such i thought i would pass it along they also make some swadling clothes

https://www.halosleep.com/products/...attress/21/halo_active-airflow_crib_mattress/

scott