Sleep Study

[Denae]

Of course she didn't have any of the "voice" episodes while we were there. She hasn't had any since the other night, which I am super thankful for.

Hopefully that was our last time anywhere near a hospital for a long time!

I was shocked this morning when the tech came in to unhook her and she said that we would have to wait until Dr.S reviewed the sleep study results to have her machine set. He told me in the office last week that we would be able to set it before we left. She said that her needs varied quite a bit depending on what stage of sleep she was in. At one point she was at 16/12 and still was having apnea, but she said when she moved it up she started having arousals because of that. At 16/12 she did better, but then when she came out of REM sleep she didn't need it that high and would wake up, so she moved her down to 12/8 and maintained it there but she was still having signifigant "shallow breathing" spells.


So we wait...

Not much else going on here, we are just being lazy today, Ri is in the chair half asleep and I think a nap sound great just to lay in my own bed for the first time in nearly 2 weeks...

[lacyndarella]

Completely off the topic: That picture of Riley is absolutely gorgeous!!!!!!

K. Now. It's strange that the doc told you one thing and the tech another. Hope you got the answers he needs though. It sounds like Riley is just a very complicated little girl. HA. Like we didn't know that! I really hope this study helps to nail things down.

Lacy

[Carly'sMa]

Love the picture! She looks like the quintessenital red haired freckeled girl!

Hope you get answers soon. The doc probably didn't think it was going to be that complicated.

We are being lazy here too. It's about 85 degrees (maybe more by now). Carly is bored and just wants to go out. No can do. I just gave her a bath and summoned dh down here to take over for a little while.

[Denae]

he didn't- of course he doesn't know Ri very well yet either.

When we talked to him Thursday he apologized for making us come in, he thought we would be spending some time doing real trouble shooting -how to get her in the mask all night long- He was shocked that she wears it all night with no problems.he said we could have just talked on the phone and set up her titration sleep study... (its actually ok, he is absolutly adorable, nice little bit of eye candy :) ) Dr.P actually commented about it in the hospital, he said "I can't believe she never messes with the mask, I watched her VEEG and not once did she take it off" "not many kids do this well this soon" I am thrilled my girl is different in a "good" way!

Anyway- Dr.S said 10, based on the results of her last sleep study and her physical appearance. She always "looks" better than she is. (sigh)

The pic was from her field trip last week. We have this really nice park between here and C******te the special ed classes have a family picnic at the end of every year.

Remember the kid who was always pulling her hair last year? Thats him beside her, he likes to pet hair this year and is obcessed with Ri's! Thankfully they have a better teacher this year and he and Ri are "friends" now.


edited* why when I type the city name c-h-a-r-l-o-t-t-e does it ***** out the letters?

[Love My 7 GEMS]

Denae.... I was reading your post too, and was wondering why the ***...then I read what the *** word WAS/IS.... too funny that the p'orn masker can't tell the name of a city from a street walker!

I, too, love the pic of Riley...it's very cute. I love carosel's, and go on one every amusement park I'm at!

I wonder if Riley would do better with a Bi-Pap... I think that has more adjustable settings that are more automated...not sure, but worth asking about.

Good luck
Dori

[Tamie]

Tyler's levels are set at 15/9. The doctor wanted it a 17/12, but that was much too high for him. He normally starts out at 11/9 and once he gets into deeper sleep, the machine ramps up at around 13-14/11. Last night he struggled all night long with the mask and his rate was 12/11. I think the seizures aggravated the breathing all night. Finally took the mask off at 4:30.
We have had to wait weeks to get the machine settings changed cause the orders have to go from the doc to the tech and then from the tech to us. Tyler still has apnea spells no matter what the setting is, but he sleeps and breathes much more comfortably on the bipap.

Love the picture of Ri. What beautiful hair!

[Denae]

I should have said it is a Bi-pap...

The tech was talking about a machine that can self adjust.. I am not sure if Ri's has that feature or not though? It is the brand new Respironics? She was still having apnea at the 16/12 setting -the hyponea is the biggest problem though, it was constant not matter what the setting.

I need to find out if her machine does the self adjusting, when Dr.S calls. The tech said something about bi-flex, I don't remember if thats what it is or if that was something else- her maching does have bi-flex and a little button we can push to start out at a lower setting then it goes up to her setting after she has had time to fall asleep.

[Guitarmom]

I love this picture of her too!!

I hope Dr S can clarify all this with this study...Waiting on results is so hard.

GLad that the voices has not returned at least!

Ginny

[RathyKay]

Of course she didn't have any of the "voice" episodes while we were there. She hasn't had any since the other night, which I am super thankful for.
That *is* good. I'm hoping it's just something you'll see when you initially increase Felbatol, and not stick around permanently.
Dr.P actually commented about it in the hospital, he said "I can't believe she never messes with the mask, I watched her VEEG and not once did she take it off" "not many kids do this well this soon" I am thrilled my girl is different in a "good" way!
Yay! It's so nice to be on the "good" side of the percentages. I wonder if it's because she was sleeping so horribly? Maybe other kids weren't as bad? Who cares, as long as it works.

Cute picture. I remember having a friend in elementary school that I enjoyed patting his head because of his soft, curly hair.:p