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Post by Googsmom aka Jennifer on Feb 18, 2009 23:44:05 GMT -5
OK.... A, you just crack me up. OMG!! I'm good, really But, I have been told that before...LOL Brook has had 4 different kinds of reflux meds. The last one was Zantac. I think she took it for a month. She seemed all better. Now i'm learning I really think she needs it all the time, forever. This has been going on sence birth. I used to have to sleep w/ her on me upright so she wouldn't have a upset tummy. Thx to the Chris's {{{{HUGS}}}} And i'm going to research this scope too. Maybe thats what they saw on the xray the doc took of her throat a couple months back, reflux damage. It was very swollen. Hmmm,,,, Quote... "Jen, I was not worried until I read this thread. Now you have opened a whole new door. But I am glad I have a little more knowledge. Thanks!! " {{{{HUGS}}}} I feel bad. I don't want to make you worry but at least we both know more now. I love this board
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Post by danikins on Feb 19, 2009 19:43:44 GMT -5
Hi Jennifer,
Just read your post. Dani doesn't have the reflux--at least not that I am aware of. She did have a sleep study and a T & A when she was three. I was a mess too. Dani rolls all over the bed. Not sure if the T & A helped as my ex left right afterwards and I have not been back to her ENT--whom is awesome. However, Dani sleeps with me now--I know--bad momma. But, she seems to rest better and moves a lot less.
So--come back here or e mail me on Facebook. Brookster will be fine. She is strong. Whew.
Kim and Danikins
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Post by Googsmom aka Jennifer on Feb 19, 2009 23:50:48 GMT -5
Kim, Brook has slept with me her entire life. Hey, maybe she needs her own bed.....LOL Today proved she doesn't sleep well. She slept 3 times today and is now in bed on time. She didn't want to eat tilll dinner at grammas tonight either. Normal is maybe 1 nap for 2 hours and eats all day.
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Post by jelanismom on Feb 21, 2009 6:28:42 GMT -5
I'm not familiar with the meds or reflux... but I can say that I know what you're going through...especially the doctors walking away into the OR with your baby part. It gets easier to deal after the first couple times...at least for me is has....but I'm still a bucket of nerves. Jelani had terrible abstructive sleep apnea with ginormous tonsils and adenoids and at 3 years old had a sleep study and T & A. He's had fluid build up too but never needed tubes...the ENT drained the fluid during a wax removal procedure when he was under anesthesia. The wax removal is a common issue for Jelani every 6 months...and he needs sedated for it. He'll need sedated for just about everything now that he's intolerable to being held, touched, and looked at by a doctor. Awhile back I posted my concerns about his sedation for hearing test...(which is normal yay!)...and I had a few responses I didn't agree with. (luv everyone none the less) . It never gets easier when our kids need to go under sedation..and it's becoming a common need for Jelani. So I have been trying to coordinate many specialists to come in while he's sedated this coming summer... Anyway, after the T & A he slept better and stopped snoring. I will be sending a prayer for Brook that it all goes smoothly and her mommy can feel less worried...sorry I have no advice but glad others here do. Oh and btw.. Jelani sleeps with me off and on...I don't care if that makes me a bad mommy!
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Post by Chris on Feb 21, 2009 13:34:57 GMT -5
Ummm..........my older daughter slept with me until she was nine years old. She used to take my hair and twirl it around her finger so if I tried to get up, it would wake her up. I think we were especially close because of all the cuddle and talk time we had together. I remarried when she was nine but she understood it was time to sleep in her own bed. I still would lie down with her in her room for cuddle and talk time before she dozed off. Sarah has always slept in her own room and own bed. None of us are able to sleep with her in the bed. She takes up most of the bed and my dh and I are clinging to the side of the bed. We have been forced to share a bed on vacations. I don't believe sleeping with your child makes you a bad mom. I think most breastfeeding moms let the baby sleep with them. I know that's how it started with my older daughter. Sarah was never able to breastfeed so having her sleep in her own bed was easy. Ok, another confession...........I still rock and sing Sarah to sleep. Yep, you should see me trying to get out of the chair with my 55 pound, seven year old child. I guess it will be self-limiting. We still love that peaceful time every night. I love hearing her sing with me, too. ;D Chris
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Post by faithhope on Feb 21, 2009 20:49:54 GMT -5
Awww ((((B(G HUGS))))) for you and Brookie! I am sorry that she has to go through that. I am afraid Noah may have to also. He keeps having to go back to get Audiological Evals. and ENT checkups. They have not been able to determine whether he has fluid of hearing issues on his right ear He goes nuts when they try to put anything in his ears. Question Jenn, what is the sleep study for? Love, jess
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Post by Googsmom aka Jennifer on Feb 21, 2009 22:51:22 GMT -5
They think she has obstructive sleep apinea. Hubby has sleep apena too and Brook does show some signs. She does not sleep well. It's becoming a pattern and effecting her day time happiness. (and mine...LOL ) I'm still not convinced of the tonsil/adnoid thing yet. Tubes and a firm diagnosis of what kind of "malasia" she really has and reflux is my concern now (the more I think about it) I will call the ENT and ask a few questions. I'm trying to get the funny noise that she makes in her throat on video so the doc can hear it. It seems to be getting louder.
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Post by Chris too on Feb 22, 2009 13:04:19 GMT -5
Stevie made a bizarre noise when she slept - kind of a sudden honking-squeaking thing. The ENT who did her surgery imitated it precisely without ever having witnessed her sleeping He said that it was likely due to what he called a "floppy projection" on her voicebox that could be lasered off. So they did a rigid bronchioscopy to see (rigid so that they could use the laser if they found what they expected) and found just exactly what they thought they would. They took pictures of it and lasered the thing off. It got rid of her obstructive apnea completely. The procedure was called a superglottoplasty, and though done frequently at Riley Hospital in Indy, isn't done elsewhere much if at all. I was told later at St. Vincent that she was lucky to have gotten one 'cause they'd have just given her a trach (sp?). Crazy. Such a simple solution that worked 100%, yet it's not popular. I wonder why. Do get it on video. If your ENT can't diagnose it, perhaps you could e-mail it to Riley.
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Post by Googsmom aka Jennifer on Feb 22, 2009 15:06:49 GMT -5
Good idea Chris {{{HUGS XOXOXOX}}}}}} I leave tomorrow for vacation but as soon as I get back i'm on this!! Off to research this Good thing for small towns today. I hapen to be at the store/pharm and was going to get some little tummys b/c her old script I thought was no ggod. I just happen to ask and waaa laaa, they let me have another bottle. So now Brook is back on the Zantac
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Post by Googsmom aka Jennifer on Feb 22, 2009 15:49:25 GMT -5
Chris, I looked up some things and it brought me to a You Tube video. This is EXACTLY what Brook sounds like almost ALL the time. Sitting up like this is worse. I'm very freeked out now watching all the stridor video's. I'm in tears. I'm walking away from the computer now (for awhile anyways ..LOL) www.youtube.com/watch?v=kiEZNd83_NI
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Post by sd112170 on Feb 22, 2009 15:52:58 GMT -5
Hugs Jennifer!!!!! Prayers to you guys from GA!!
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Post by Googsmom aka Jennifer on Feb 22, 2009 21:50:53 GMT -5
It didn't take long to get a video. She does this all the time. (This funny noise started about 6 months ago or so. The honking funny noise she made when she was a baby didn't sound like this) Even when she is awake you can hear this when she breathes. It gets a little better while lying flat but not much. About 40 seconds or so she almost quits taking breathes but then gasps for air. What do you all think. Freeks me out. I never get sleep www.onetruemedia.com/shared?p=821d30a67ee4025d50a251&skin_id=701&utm_source=otm&utm_medium=text_url
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Post by Chris too on Feb 22, 2009 22:04:25 GMT -5
When's the sleep study? Soon I hope. It sounds, to my untrained ear, like she can't fully exhale. You caught an apnea episode in there too, but what you called gasps, I'd call good, deep breaths. They are what are keeping her safe for now, I'd guess. Remember when you had breathing exercises for labor? After all that holding of your breath for pushing, you are to take some "deep, cleansing breaths" - that's to get your O2 level back up. It was those breaths that make me feel a bit better about the whole thing.
Poor Brook; she can't be getting very recouperative sleep like that, and you, poor Momma, can't continue not sleeping. Get that study done tout suit, madame! So that you can all sleep easier.
I'm praying for you both, girl.
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Post by Googsmom aka Jennifer on Feb 22, 2009 22:10:33 GMT -5
I will be making the appt in the morning before we leave and if it can be tomorrow then hubby can go to the coast by himself!!!! I read some pretty desterbing stuff today on all this *malasia* thing, she has to get in there soon. XOXOXOXO I feel like crap for not really researching all this years ago when I first heard the words come from the doc's mouth. She used to be better and you would only hear it if she cried. Now its worsest ever
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Post by sd112170 on Feb 24, 2009 19:45:27 GMT -5
prayers from GA!!!
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