Monday, March 12, 2012

Nighttime Waking

You may think this is a blog about Mckenna and her nighttime sleep habits. However, this blog has nothing to do with Mckenna, and everything to do with my hubby.

As some of you may have read in the past, Ronnie sleeps with oxygen at night. A few years back, he told his doctors that he often woke up with headaches, so they did a sleep study and found that his sats were dropping at night...hence the headaches. So ever since then he's been sleeping with 2 liters of oxygen, breathed in through a nasal cannula. Ever since he started sleeping with oxygen he sleeps so much deeper, better, quieter and wakes up with no headaches.

You may ask yourself, "quieter?!" And the answer is, "yes...quieter!" I'm sure most of you CF spouses, and maybe some parents, can related. There is a certain "snore" that Ronnie does sans oxygen. It's a half snore, have gasp sound, that is loud enough to make it hard to sleep. He's slightly loud when he's sleeping on his sides and really loud when he's on his back.

So I'm sure you're wondering why I'm posting this and what it has to do with me. I am the oxygen police. In the night if I hear loud breathing, I reach over and feel his face to see where the cannula is; when I get back into bed after feeding Mckenna, I feel his face; when I go to the bathroom and come back to bed; I check his face when I hear a "pufffshhhhhhhh" sound (which is almost alway the nasal cannula blowing into his eyes); I feel his face when he's breathing really loud. I feel his face and wake him to fix his oxygen at least 2-3 times a night. I do it for him (so he sleeps better) and I do it for me (so I sleep better not listening to him). Annnnd I also do it because when he's slightly awake I can say, "snuggle me," and he will! Hehe!

What's the point of this post? There isn't one. Other than maybe if you or your loved one wakes up with headaches it may be a good time to do a sleep study. And I'd love to hear from those of you who wear oxygen at night...where all have you found your nasal cannulas? I'm often shocked where I end up finding Ronnie's. Anyone have tips for keeping it in place?

Comments (11)

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I sleep with 2 liters at night as well, and I'll find it pushed up holding my bands back (like I did this morning), in my hand, on the floor....it always makes me mad when I wake up and haven't been using it. Not, only was my body not getting what it needed and I usually will have a headache, but all the energy I've wasted having the concentrator on without it doing me any good. You're a good wife.
1 reply · active 681 weeks ago
Fishing for our line in the middle of the night must look pretty priceless :)
Jesse doesn't wear oxygen, but he does have a CPAP that just forces room air. He was getting terrible headaches and did a sleep study too. Ever since the CPAP, no headaches. He coughs less while he sleeps, makes less noise, and sleeps more still now (he used to end up on my side of the bed), so we both sleep much better. It doesn't come off since it straps around the back of his head. Maybe you could look into finding a mask for the oxygen?
1 reply · active 681 weeks ago
That would be interesting to test out. Wonder if I'd do even better with a full mask rather than a cannula?
Anna Modlin's avatar

Anna Modlin · 681 weeks ago

Before Transplant I slept with a cannula. I would put it on tight, with the little plastic thing up at my chin, so i wouldn't pull it off in the middle of the night. That worked well. My sleep problems actually turned out to be sleep apnea, unrelated to the CF, so i have that on top of everything... fun! But O2 definitely helps with sleep when you need it. I think that the CF clinics don't test for this soon enough, people have usually been suffering for a while before they even THINK to figure this out.
1 reply · active 681 weeks ago
I agree. When people are having issues, that one of the first things I ask them - "Have you had a sleep study done?" :)
Ok, I have a funny picture of you pawing at Ronnie's face a he sleeps. Does this not wake him up?

The other day I woke up twice ( first time I just rolled over and went back to sleep) to this VERY annoying but loud ssssssss noise. First I thought it was machinery outside. Second time I realized it was my O2 stuck under my fat neck:-) Usually it's stuck to my cheek.

Is McKenna sleeping through the night at all?
2 replies · active 681 weeks ago
I'm a pretty deep sleeper and actually remember about 1/2 of the time that she wakes me up. I fall right back asleep quickly.

Mckenna is doing better, but still inconsistent. Two nights ago was great, last night? Eh.
I would argue that he remembers far less than 1/2 the times, and I think he has no clue just how many times I feel his face in the night. I try to be gentle and swift :)
I used O2 at night pre-tx and would also wake up in the middle of the night and the cannula would be on the floor and not on my face! When I mentioned to the Dr. he suggested maybe using like 2 little pieces of tape (you know the soft hospital type of tap) to hold it in place. Also, do use a concentrator at night?? That's what I had and we actually had to have it outside the room with a HUGE cord to the bed because it would get EXTREMELY hot in our bedroom if it stayed in there. Plus it sounded like Darth Vader was sleeping in the room with us! LOL :)
1 reply · active 681 weeks ago
I have mine about 15 feet away from my bed in a little closet. It definitely heats up in there!! :)

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