The ENT says.... and Swallow study guy

[Googsmom aka Jennifer]

That Brook will definatly need a T & A and tubes Brook also quits breathing/apena episode 9.6 times in an hour How can I ever sleep again?!!! I'm just bawling I can barely type. I'm so scared. ENT is looking at the video now. Will call me back if she wants to see Brook sooner. She reviewed everything Dr Tami sent her and really thinks Brook also has that big word I posted. Tracheal-bronchial-laringeal-malasia and subglottic stenosis. What a big stoopid word!! She says if I want her to look down her throat they will do all of that at the T & A/tube procedure. She assures me every procaution will be taken but I still sounded like a bawling blubbering fool on the phone Oreo's here i come!!!!

This is the latest email just now:
I believe that she has laryngotracheomalacia. I am not concerned - it is just noise. She is in no distress and her activity is not at all slowed by it. It is louder when she is active since she is pulling in more air when she is running and active. I will stick with my plan to look in her airway at the time of her PE tubes and tonsillectomy/partial adenoidectomy.

Dr. MacArthur
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UPDATE 3/31
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Just in from the Swallow Study Speach Theripist: (who we see alot for swallow studies and has more films of Brooks head than my camera holds film...LOL)

"......... Brook has a very unique cranial facial makeup even for a child with Ds. PLease bring her in for a check up before you agree to the T & A............" ".....with Brooks history of Pharyngeal pooling and arch and triangle something or other in her palate this could pose a problem...." Ok. Making appt now

I am not crazy. I knew someone sometime had told me this. I have so much to remember I just couldn't pinpoint who it was. I spent a good part of yesterday signing and faxing release forms to everyone. I hope the ENT listens to me now. She can't know everything from a 10 minute visit and a peek in her throat. Oh and a sleep study. She just can't and that was my whole delema. She wasn't hearing me. Hopefully now Steve can shed some light on what is going on w/ the Brookster.

[Jessie]

Oh, I'm so sorry!!!!

[[[[]]]]



Jessie

[wrblack]

Well, our compliments to Brook for not letting all that stuff slow her down hardly at all.
I would tell her mom to calm down, but that's probably not doable nor advisable. Don't think it would have been a good idea for anybody to tell me to relax anytime I was handing Charlie off for a trip to an OR in his salad days.
But we'll just hope for an excellent outcome for the tube and T&partialA procedures.
Charlie's T&A didn't happen until just a few years ago. He was a bigger kid by then. It wasn't fun but was very beneficial. Funny thing though what bothered me after it was all over.
We still have a baby monitor set up next to his bed. First days, weeks after T&A was worried by the quiet. We'd become accustomed to hear him snoring like a freight train, and it was bothersome that he was so d**n quiet.
Take care. Oh, and don't think Brook will be any less cute after procedures, but may well, we hope, make fewer funny noises.
-- Bob

[lorraine]

{{{{Huge hugs}}}}
But at least you have it from an expert that you don't have
to worry about the noise

Lorraine

[kg91207]

Oh my gosh, I am so sorry! I would be freaked out too. We have been fortunate to not have to face anything major yet with Kaelyn, but I know it's coming, and I cannot imagine how much of a mess I will be! I'm sending you lots of hugs! It will all work out just fine though, our kids are tough!

[damarasmom]

AWWWWWEEEEE, I can totally relate to how you are feeling. Once Damara's T&A was done although done seperatly...she didn't snore, she sleeps so much better and I no longer worry about her at night. So...the trick is to make it through the proceedure and recovery, then it will be soooo much better!!!!
HUGS to you!

[Emilysmom]

I'm so sorry, Jennifer. I know it wasn't what you hoped to hear!! But for now, I'd try (key word....try) to focus on what the doc said about the fact that she is in no distress ( you could sure see that in the adorable video of her!!), and that he wasn't worried at this point. Hang in there. Brook has people praying for her all over the country! ! ! ! ! !
Hugs,
Susan

[Googsmom aka Jennifer]

Thx everybody I think the bawling is over now. It will be ok I'm just worried about the cleft in her mouth. I have a call into the ST of EI, who helped in her feeding plan, to see if removing her adnoids will make speach worse or even non existent. I surely don't want that. Her speach is just boooming right now. And we don't know if the cleft/hole/pond what ever it is, is still there or all magically gone. We will have it looked at on the 10th. We will cross that bridge when we come to it. I will be a big girl w/ my big girl panties for this. I was just in denial. I don't like this but it has to be done. I'm pulling strength from the blogs I read and my friends. Those kids and their parents are really struggling w/ major issues and here i am whining about something that is so minor. {{{{{{HUGS EVERYONE}}}}}}}} Uno is the best!!

[sd112170]

Will this help with the apnea? Could you explain the cleft/hole/pond thing? I have noticed the "roof" of John's mouth is awful deep. Could that pose a problem later? Just curious.

[faithhope]

(((((((((((((HUGE HUGS)))))))))))))))))))))) I am praying for her and for you. It will be alright. I am so sorry Jenn but I was hoping you could explain what issues Brook has that made you have to go to ENT?
Love,
Jess

[Chris too]

Less than 10 episodes an hour? What were her O2 sats? Stevie had 85 episodes in just 3 hours when she had the obstruction, but even then her sats never got into the 80s. It sure sounds like Brook is getting excellant care, Jennifer. I'm glad you're getting a handle on those nerves.

When's the T&A with bronchioscopy? Have they set a date?

[Chris too]

Forgot the (((((hugs)))))

[Googsmom aka Jennifer]

What!!!! 83 episodes in 3 hours..... OMGoodness Chris, THAT is alot and here I am bawling about Brook 9.6. {{HUGS}}} I forgot to ask the ox stats number. I just wrote it down to ask ;)I figure that Brook wakes up not breathing once every 7 minutes. I hear one or three of them at night and the others correct themselves sooner I guess. I can tell the one's she needs help b/c she gets scared and cries untill the breathing is better. Poor kid


Jess....good to see you girl. Better post an update soon!! How we got sent to the ENT. Well we went to the Ds clinic and Dr P asked if we'd ever seen an ENT after Brook failed her 2nd hearing test. Never been to the ENT before so off we went..... then talk about tubes to drain the fluid in her ears. The doc wanted to do a T & A and tubes after knowing Brook for 10 minutes. Asked if she snored. I tried to simulate the funny noise she makes and we were off for a sleep study. Now here we are....

Stacy, this is tricky and i'm still trying to peice it together. When Brook was 2 mths old we went for her first swallow study. She was blowing chunks out her nose all the time. They put her on some sort of Zantac and told me she had (fill in big doctor word here.. submucous cleft palate) aka nasil regergetation (pond, cleft palate) reflux, gerd, (which I think are the same thing) and Tracheamalasia. Soon she would grow out of it they said. It was easy fix of things to do so it just became normal. Brook could not lay flat at all, slept w/ her on my belly b/c i was sure she would choke on this floppy airway and I wanted to be able to hear her etc.... (insert hubby's heart attack here w/ waaaay to many doctors appts and I think this is where I get lost) Forward about a year, Brook kept getting food stuck on the roof of her mouth. Like stuck where I didn't feel it was "still learning how to swallow" type of thing. Off to the dentist and he said cross bite and cleft palate. No one really seemed concerned so I wasn't either. Thats where that sits. Waiting for a call back from all of the above to get copies of her files before we go to the ENT again so all of these things she can read. I can only remember so many things at once in the office

Here we are today, learning another valuable lesson from the Brookster. Man I love this kid!!!!

[Ericsmomma]

So glad you found out what was going on with Brook...
Your doctor seems right on top of things. And don't apologize about being upset..we've all been there!

[steffipoo]

Hey Jenn Glad to hear you all will know what is up after t and a. I was scared for Livs speech after t and a and then immediately afterwards in her gruff voice she was crying for the nurses to get her MOMMY NOW!!! I mean right after. And she too has the really really high n deep roof of her mouth. EVERYTHING usta get stuck there. I usta make her get peanut butter outta there for tongue practice not knowing how deep it was then discovering every kind of food gets stuck in there but must've produced great tongue strength getting the stuff out.She still to this day won't eat foods like untoasted bread as it gets stuck up there and she gets grossed out now.It never affected her speech and no one ever told me anything other than the roof of her mouth is deep. Kinda like a deep upside down U. Never ever affected her speech. I would say that the t and a will save you all many years of green snotty noses thru the preschool years so that is good. (((HUGS))) glad to know it's all getting taken care of. Steff