Special Needs
amajane
member
Failed the sleep study
amajane
member
Well that wasn't a fun experience. Poor Marley was so miserable with all the wires and nasal canula stuck up her nose. With all the crying, she was 10 times as congested as she usually is. She snored very loudly and had long periods of apnea. The doctor told us her 02 sats dropped into the 70s while she was in REM.
So we need to see the ENT ASAP to get her surgery to remove her adenoids and tonsils. In the meantime, she has to be on 02 while she sleeps (via nasal canula). How are we going to manage that?
If the surgery doesn't cure her snoring and sleep apnea she may have to get a trach. Ugh!
Does anyone have experience with 02 supplementation or surgery to remove your DC's tonsils and adenoids that I they can share with me?
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Re: Failed the sleep study
This is the first time I have posted (although I have been looking a lot!). I like this board and saw your post a little bit ago and I just wanted to tell you that I have been through it! My DS had a sleep study done at 1 month, again at 4 months, 7, months, 10 months (at home) and hopefully another one soon! He was diagnosed with central and obstructive sleep apnea. They decided not to take out tonsils, etc. because they did a number of scopes down his airway and didn't think that was the root of the problem. Anyway, he was put on it 24 hours a day since 4 weeks old. In May he was taken off during the day. I never felt like he did well during the sleep studies since they had to continue to adjust whatever he pulled off. Most often he seemed to be congested when he had them too-what luck huh? His O2 stats dropped to the low 60's without 02 and he obstructed 58/hr his first sleep study so he has come a long way!
He still uses O2 with the nasal canula a night and naps. It is becoming more difficult to put it on him (although I am an expert now!) because he whips his head around and rubs his nose to get it off. I have to put small tape on both sides of his head when he sleeps (the paper feeling tape) so he won't take it off. I hated the things they gave me to keep it on him since the bandaids are SO sticky and made his face breakout in hives. Sometimes I put it on him when he is asleep and it is easier. Sometimes I wake up in the morning and he has ripped it off but it doesn't happen very often. He still snores and is a loud sleeper. I just bring the travel tank out with us in case he falls asleep while we are out and about.
I hope this helps! It gets easier when you do it for a while and now 11 months after we started it doesn't seem like it was that terrible. Keep your head up and just know that she'll be off of it eventually. The O2 also helped my DS with development too!