Got our CPAP today....

[laurasnowbird]

and this should be fun, LOL!

Actually, I'm amazed at the small size of the unit, and it makes almost no noise!

Ethan fought like a wildcat when we tried to get it on him while the tech was here. We got it on him and fitted, but it took three of us to do it! It wasn't pretty at all.

After she left and he calmed down, I promised him he could play his favorite new Wii game, but only if he wore his mask. He let me put it on him, and settled down to play. I wanted to try to get him used to it before tonight, and also make sure it wasn't too tight. After about a half hour, I turned on the pressure. He didn't like that too much, and ripped it off, so I turned off his game. He agreed to put it back on, I turned his game on, slowly ramped up the pressure, and he kept playing! It left marks on his face though, so it was too tight.

I decided to try again this evening, and Victoria was a tremendous help! We had an extra mask to practice with, and she came up with the idea of wearing one too! She made a big deal about putting it on, and how cool it was, and that she was going to wear hers to bed too. I was so proud of her. The only downside was when Aidan started crying because HE didn't have one, LOL! He's been wearing it for an hour and a half now without any problem. We'll see what happens at bedtime tonight.........

The surprising part is that his cooperation has been this good, considering his sensory issues. I have no idea what the night might be like, but I never expected to make this much progress in a single day. I think now that he's calmed down, he may actually find the pressure of the mask against his face to be somewhat calming because it give him lots of sensory input.

[Googsmom aka Jennifer]

{{{{{HUGS}}}}} That progress is wonderful. Good job momma Here's to a good night sleep with the new cpap

I have to tell you the decription of the events reminded me so much of when hubby got his cpap....LOL. Boys will be boys

[laurasnowbird]

LOL about hubby! And boys WILL be boys, won't they?

11:00 pm and all's well. He wasn't happy about putting it on at bedtime, but gave in because he could see I wasn't budging. He is currently fast asleep, and he's NOT breathing through his mouth!!!!

I'm wishing I had thought to give him some of his timed release melatonin tonight, just to increase the possibility that he would sleep through the night......sigh. I always have these brainstorms a little too late.

[Chris too]

WTG Laura! Good work. And there's always tomorow for the melatonin
Sweet Dreams!

[Emilysmom]

Laura,
I'm so glad the first evening with CPAP went so well, and I hope the whole night went well too! WTG Ethan! And what a precious sister he has!

Susan

[Pat]

Great job, Laura!!! ;D ;D
I don't know that I would have gotten any sleep if John-John had to wear one. I give you a Lot of credit. I don't forget the melatonin though. lol
Pat

[damarasmom]

That is great news, and good for him for being so cooperative!

I have to say, when I read the "subject" I THOUGHT it said "GOT OUR CRAP TODAY" LOL...

[laurasnowbird]

Hmmm, that must have been a fluke. I put him to bed late so he'd be really tired, but he wore that thing from about 10:15 until 8:15 am. I checked him every hour last night (I'm exhausted, LOL!) and it was the weirdest night ever.

He slept in almost the same position all night. Very little moving about the bed, no taco sleeping at all, and kept the mask on all night. I'm unaccustomed to checking him and finding him in the same position hour after hour. It freaked me out....he was sleeping so soundly I kept checking to see if he was breathing. I used to finding him in a different position every time I check!

Wow, that's all I can say. I'm just amazed. I never dreamed we'd get him through a night unless I spent the whole night hanging onto him and keeping his hands off the mask. I figured we'd spend two or three weeks like that before he got used to it.

[Googsmom aka Jennifer]

Great news!!!!

[sd112170]

Wonderful!!

[steffipoo]

Hi!!!!

WOW thats great news. Me thinx Victoria played a HUGE role in that outcome there. Sounds just like something Kyle Livs bro would do.... And this line cracked me up the most....

The only downside was when Aidan started crying because HE didn't have one

Oh man.... lol.... glad all is well... nothing like a good nights sleep. Wait till he gets a week of it. People have no idea how tiring it can be for ppl with sleep disorders it affects everything. I'd be nuts its the only constant thing I ever have. Not good anymore on little sleep and take it as often as I can. Rip Van Stephanie. Swear in bed at 9-10 pm sometimes earlier sad to admit. okily dokily have a great restful night now u know it's working up to snuff. Nighty night, Steff

[laurasnowbird]

I'm sure you're right Steff, and we'll really see a difference as this little experiment progresses. Gotta say, the neurologist agreed with you, said it would be two weeks to a month before we saw the full effect of restful sleep on Ethan.

He went to bed at his normal time tonight (between 8:30 and 9:00) and I got very little argument about his mask, although I let him play with his Nintendo DS in bed for awhile. I also remembered to give him the melatonin tonight. Double whammy, LOL!

It's 11pm and he's sleeping soundly. I'm going to try to resist staying up all night tonight, cuz I'm whipped. I have an extra one tonight, my 18 month old niece is spending the night. My brother and his adorable wife are expecting number two in a couple of weeks, and I thought they could use a full night of sleep before the next little nugget arrives, so we have an overnight guest. According to her mommy, she gets up at 5:30, so I'd better get my butt to bed. I'll probably spend the whole night listening to the baby monitor in Ethan's room, LOL!

[Jenifer]

Hi Laura,

Could you tell me a little about your journey to the CPAP machine? Was Ethan diagnosed with sleep apnea, hence the machine? If so, how severe did they say his apnea is?

I ask because Joy has been a TERRIBLE sleeper, pretty much her whole life. But in the past year it's just gotten worse. She thrashes all night long, sleeps sitting up, sleeps in the taco position, and so on. She gets out of bed multiple times each night. She wanders the house. She sleepwalks. And here's the kicker ... she is on a nightly dose of .20 mg of Clonidine!

Two sleep studies have come back "normal," although at the last one I sat there and watched her thrash about while her O2 sats dropped into the 80s and her heart rate shot up to the 140s. I have a hard time believing there's not something going on, despite the sleep study results. An EKG a couple of weeks ago revealed a sinus arrythmia, though we're still in the process of discovering what that means, if anything.

The sleep studies have been ordered by her pediatrician, but I'm thinking of asking for a neurology referral, and then asking to be prescribed a CPAP just to see if it makes any difference in the quality of Joy's sleep. I don't know if they'll do that since she's not diagnosed with apnea, but I'm getting to a point of desperation that will cause me to beg. Anyway, just curious about your story if you care to briefly share. Any insight would be helpful to me at this juncture. I am against putting Joy on stronger sleep meds, but I would love to see my daughter wake up well-rested for a change.

Thanks!
Jenifer, mom to Joy Daisy

[Jessie]

Wow Laura, that's GREAT news!!! WTG Ethan!!

Too funny about my little future SIL.

BTW . . . anytime you want to have additional guests in your home, let me know . . . I know of three adorable children that you can have for a night


Jessie

[laurasnowbird]

Jenifer,

I don't blame you for being concerned, that really doesn't sound right. Ethan had his first sleep study done very young, maybe at 2 or three, and it showed moderate apnea. We were referred to an ENT who said he'd grow out of it. He was not a pediatric ENT.

A few years later, we saw a pediatric neurologist at U o M because we had concerns about atlanto-axial instability. He was a very thorough kind of guy, and spent a good hour asking questions about all kinds of stuff related to Ethan's neurological health, including sleep habits. I have a notebook with lots of Ethan's stuff in it, so I shared the results of that sleep study with him. He was quite dissatisfied with the follow-up, and felt it should have been addressed far more aggressively.

Because the study was a couple of years old, he sent Ethan for another one. It still showed moderate apnea, so he referred us to a pediatric ENT to have his tonsils and adenoids removed as a first step in treating the apnea. A few months later we did a post-surgery sleep study, which showed that while his apnea had improved, he still had mild apnea. His neurologist was very firm in his recommendation for a CPAP, and said that even mild sleep apnea has effects on behavior and learning.

It certainly sounds like Joy's sleep is very disturbed. In retrospect, Ethan's sleep issues were not taken all that seriously until we saw the ped neurologist, probably because his specialty has the best understanding of sleep and related issues.

Some of the best advice I ever got was from the pediatric ICU doc that treated Ethan when he was in the hospital at six weeks old with RSV pneuomonia. I had believed he was very sick, and his doctor kept telling me not to take him to the ER. I finally ignored his advice and took him, thank the Lord, because the poor baby's oxygen saturation was in the 70s. The ped ICU doctor had heard the story, and pulled me aside in the hospital to tell me that a mom's instinct is a precious gift, and when it was telling me something, I needed to listen very closely and act on it.

I'd rather be the mom everyone thinks is a paranoid freak, than the mom whose inner voice told her something wasn't right but ignored it, or let some expert talk me out of it, KWIM?

Please let me know if there's anything else I can do to help you with this, K?