T and A/sleep study ?

[Googsmom aka Jennifer]

;D So, Brook had her tonsils out. Spose to help w/ her sleep apena. Dr Tami yesterday said this major retracting Brook is doing when she sleeps (the past two days) could be a sign the surgery didn't work. She was fine for awhile but then started siting up in bed while sleeping and everything she used to do back in the days before surgery. and now, she's doing this retracting while trying to inhale while sleeping. (her whole chest and throat will suck in something big time. I almost ran her to ER but I woke her up and she seemed fine. She went back to sleep. No sleep for mom) Bumm deal. Were being sent back to the ENT for a check and another sleep study. Dr Tami said she might need oxygen or a CPAP if the study shows the same results as last time w/ no improvement after surgery. I'm just Praying this pesky Laringotracheamalasia isn't rearing it's ugly head. That would suck!
Anyone else do the T and A after sleep study and it still didn't fix the problem?

[steffipoo]

Hi... Just wanted to let you know that Olivias t and a took about a full year to show how amazing her sleep had changed. I was worried cause she still sat up to sleep or slept taco style for at least 6 months after surgery. She too sounded not as great as I would hoped over her first winter after t and a ( she had hers done in may). The ent and pulmonary doctor told me to wait a year if she had no major problems. So we did and her improvement was slow but steady and I swear she hasn't been really sick since. She's going on almost 7 years of great health and she literally lived at ucla her first 2 years of life and then some more till about 4 years of age when she had her t and a. When did Brookster have hers done? Liv still has the same low gruff kinda hoarse deep voice she had as a baby. We usta always laugh cause we said she sounded like our gruff sailor-mouthed finnish grandma. And the worst sounds came out of her when she exhaled. UGGG we'd get stares.... Now the child is so healthy I looked it up and she had pnumonias where she had to be hospitalized over 12 times before she was 14 months. Her lungs have scarring but luckily she's been so healthy. I wish Brookster the same fortune as Olivia. Liv had the tracheabronchomalacia so maybe they differ in their symptoms after t and a. Heck who knows??? HUGS ME

[steffipoo]

Oh yea we waited a year for repeat sleep study no apnea and much better 02 sats

[Googsmom aka Jennifer]

Surgery was in April. I just remember the fear when the doc said how many times she quit breathing and for how long. I'd have to look it up to remember the exact amount but it was wayyyy to many for this momma. I remember not sleeping for awhile. Freeked out she wouldn't remember to breathe. The same thing she did when she was born and on life support, would forget to breathe, the little booger. The stridor is also back full forse this week. Her lungs sounded clear when Dr Tami checked them. That darn noise will always freek me out. I've seen what her little throat looks like inside when it's noisy, sad little throat, so floppy. I just always have the fear as when she was little and it wouldn't correct itself in a timely manner and she'd gasp and freek out for air, patting her bottom so she would "wiggle" her throat open. Scary scary scary thing when your kid isn't getting air. Sorry way off topic and jappering away here. Just a little worried. I hope for the best but always remember where she was and how far she's come w/ her still floppy little throat.

[CC]

"Anyone else do the T and A after sleep study and it still didn't fix the problem?"

YUP Chris had a T & A and did not fix the problem

I will be honest here they wanted Chris back quite some time ago for another sleep study and I have just put it off as for now it is down on our list. They said the next step would be a CPAP and there is NO way Chris would tolerate that

Hmm Laura I know you stated Ethan on the CPAP how is he doing on it?

CC ~

[Googsmom aka Jennifer]

That is the first thing I thought of CC. I'll have to fly Laura and Ethan out here so he can show Brooker how to be big and wear the darn thing..LOL Dr Tami asked if I knew of any children w/ CPAP and I said only one (Ethan). She asked at a conference she went to if anyone had any suggestions as to how to get them to wear it... No one did she said. We'll see how it goes I guess.. {{HUGS}}}

[Chris too]

Laura said that she made Ethan wear it while he played his favorite video games If he wouldn't wear it, he couldn't play the games - that way he got used to wearing it. And I think I remember her saying that she had to stand guard over him for awhile to make sure he wore it at night.

Jenn, why don't you see if you can find a therapist - speech or OT - who's been trained in the Beckman method? It's mostly mouth muscle work, but I wonder if those trained in that would have a clue about finding ways to strengthen those throat muscles too. One of Stevie's docs insisted that therapy would not help her learn how to swallow thin liquids, but our therapist proved her wrong. I'm just thinking that there just might be a way to purposely work those muscles to build up the strength so that it won't collapse like that anymore.

(((hugs))) I know how hard it is when your kiddo isn't breathing well - scary stuff.

[Googsmom aka Jennifer]

Just so happened her ENT visit and her IEP was today Of corse I didn't see this method beforehand I'll look into it and ask the two ST's when they call. Her PT and OT and one of the teachers were there today. The PT has another little one w/ almost the same issues and he wears a little neck brace at night to keep the throat straight and not bend all around squishing the airway. The ENT thinks this may be a factor as well, squishing the airway. Why does she think I stay awake alot to move Brook back into "breathing position". She is just stumped as to why this malasia hasn't resloved itself yet. Brook talks well, has good clarity, usually malasia kids don't I guess, their throat is to floppy. Brook is confusing the momma Another sleep study and scopes in her future. I will ask the ST's about this method. Anything they can think of. We will see whats to come for the poor little floppy throat after another night at the Marriott

[Chris too]

Oh, how sad for you, my dear - another night at the Marriott ;D

[Claire]

Adam now 12 had his T-A after sleep apnea test at the age of 2. It took a while also for it to make a difference. He did fine for years now since he turned 10 he wakes at every hour of the night and plays or self talk. Doesn't get much sleep. His last apnea test last year came back good, so I think our kids just don;t need as much sleep as I have talked to many parents of children with DS and most say their kids don;t sleep much either. Hope this helps.

[Chris too]

Hmmm... Stevie has always had the opposite case. She sleeps better than any of my others. Even when she had the apnea, we had no clue bc she slept sooooo well. Could have been tragic, but God was watching out for her

Every now and then she goes through a wakeful night (reflux, I think), but isn't that true of most kids?

[steffipoo]

Olivia sleeps like a rock too. On the weekdays she hasta wake at 6am but on the weekends I let her sleep in. I usually end up waking her on Saturdays n Sundays by 10:30 am so she won't be up late at night.like a rock my girl sleeps

[Googsmom aka Jennifer]

Well Brooker might not need some sleep but the Momma does..LOL We go in for the sleep study on the 9th. When Brooker has a nap she sleeps like a rock too. A good couple hours she doesn't move. I do have to go check on her alot b/c she will be so comffy her breathing slows way down and I have to stare at her to see her chest moving up and down. A little paranoid, yep Night time, a whole different story. Been told to not let her nap so then she might sleep better at night. So far no offers to come hang out w/ her from oh about 6pm till bedtime when she is *oh just so plesent to hang with* when she doesn't nap. LOLOLLL We'll see how it goes.

[hannahph]

I don't get a chance to post much here but wanted to chime in.Hannah has been on CPAP since she was seven.She is 11 now.I thought there was no way she would wear it but she is fabulous about it.It did take a while to get used to it , but we made the commitment to do it and have never looked back.It has made a very positive impact in her health and mood.

[Googsmom aka Jennifer]

Thx for the hope Heather I don't know if Brook is having a growth spurt right now or this lack of sleep, good rem sleep, is starting to have an effect on her behavior but OMGoodness is she cranky!! If it's not screaming NO and hiting the dog, it's cuddling up w/ Mom and falling asleep, way before bedtime w/ no milk. Totally out of character for the Brookster. The 9th can't come soon enuf