choanal atresia

[Guest guest]

Hi ,

Thanks for the information. With this ENT doc at Sick kids Hospital - he

happens to be the best surgeon here(I've asked around). We have a new ENT

but she also agrees he is the one to do the choanal atresia surgery. It's

just his attitude we have to deal with - so the more informed I am the

better. I would love to get the name of your surgeon and the stents and

details. Thanks for the other message with the info. on choanal atresia,

I'm going to read that one now.

Pat

----------

>

> To: CHARGEonelist

> Subject: Re: Choanal Atresia

> Date: Friday, October 23, 1998 12:26 PM

>

>

>

> Pat,

> I will get my articles out tonight. Most of them came off the net, so I

> can get the addresses from those for you and as for those that didn't I

> will scan them and send them to you. Kennedy also had the bony type,

> and the repaired it transpalatal. <Up through the palate, then drilled

> out the bone> Also, I will give you the name of the doc who performed

> the operation, I guess he's got a neat kind of way of doing the stents

> that they stay in much better, etc. People came to take pictures of

> Kennedy for another hospital when she was " stented " . I will try to get

> that info to you ASAP..

>

>

>

> --

> Graeme & Weir

> gweir@...

> http://www.geocities.com/SunsetStrip/Palms/5716

>

> ------------------------------------------------------------------------

>

[Guest guest]

,

Hi, Danny was 14 months old for the first try at the stents, he had

those in for 5 weeks, the second attempt was when he was 19 months old

and he had those in for 6 weeks. He will be 3 on February 1.

We needed to let him grow and get stronger before our ENT would attempt

the surgery. Danny had many, many problems early on so it was slow

going for a long while.

I know what you mean about the box of kleenex everywhere, we don't leave

home without a box. I tell all my friends to buy stock in kleenex! I

will definitely buy one of your gun slinger things!

What kind of laser does your doc plan to use on Kennedy if she needs it?

Thanks for the info.

Deanna Mom to Danny

[Guest guest]

In a message dated 10/23/98 10:05:05 PM Eastern Daylight Time,

gweir@... writes:

<<

Jeanie, if you want to impress Dr. e <or just see his jaw drop>,

ask him if he would plan to do the surgery " transnasally, " or

" transpalatal. " I asked him that 30 seconds after the first time he met

me and he just about dropped! By the way, he's one of those doctors

who doesn't mind an informed parent!

>>

Destiny had choanal atresia and it was opened transnasally when she was 30

hours old. The other problems hadn't been found yet and the Dr felt this was

an emergency. She came through w/ flying colors, but had to be intubated for

an extra day while the meds wore off. She only had the stents in for 7 weeks

and they never stuck out of her nose. While they were in no one ever noticed

since they were so tucked back. When the stents were removed her choanae never

reclosed. Once, when she was 11 mos old while the g-tube/fundo were being

done, the surgeon went in and lasered one side where it had narrowed some and

it has been stable since.

(Destiny 5 1/2, CHARgE, Zachary 3 1/2)

Staten Island, NY

[Guest guest]

In a message dated 10/26/98 8:51:15 AM Eastern Standard Time,

gweir@... writes:

<< At night, I find she has a harder time on her back <which

she always rolls to now> if she seems to be struggling particularly bad

at night, I MAKE her go up on her side with a roll behind her. It

doesn't always work, because she's strong enough to let me know now what

I can do with the roll, but it does seem to help when she's on her

side. >>

,

When Destiny was small and she had problems w/ secretions on her back we put

several pillows at the head of her crib and a quilt like blanket over them to

keep the pillows from being so " fluffy. " I know you can buy a foam wedge to

put Kennedy on at an angle. The principal behind these ideas are to keep her

head and upper body elevated so the secretions run down or out rather than

pooling in the back of her nose. The pillows worked so well for us we put them

in her " big girl " bed when she moved over several years ago. When we first

tried this I worried about her rolling over and smothering in the pillows (she

was 3 mos or so) so that is why we used the blanket to cover them. It made a

soft but firm surface to sleep on and kept her head up. I have met several

people who elevated the entire bed by putting blocks on the feet of one end,

but that looked like too much work for me, but they all report excellent

results. Destiny still likes to be elevated when she sleeps so we never go

anywhere for the night w/o her pillows. We now use a throw pillow under her

main pillow and both are propped up by the headboard. She still sleeps

elevated and on her back or side. NEVER EVER on her tummy by her choice.

Good luck. I hope some of these ideas work!

(Destiny 5 1/2 CHARgE, Zachary 3 1/2--tummy sleeper)

Staten Island, NY

[Guest guest]

,

Thanks for the sleeping ideas. Kennedy's mattress is elevated with big

blankets at one end that she sleeps at. We usually have pretty good

luck with the roll when we " have " to get her up there. The pillow idea

sounds good for when she gets into a big girl bed!

Mom to Kennedy 9 mos old CHARgEr, 9, 7 and wife to Graeme

New Brunswick, Canada

--

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716

[Guest guest]

Hi everyone! When was little, and sleeping/secretions were a problem,

we put a rolled up blanket under the head of his mattress. That way his whole

mattress was elevated at one end. No danger of rolling into extra bedding,

and he could choose what position he slept in. Worked for us! Croskey,

mother of Schick 14years

[Guest guest]

,

Saleah had her first surgery at 4 days old, they put stents in and left them

for 2 weeks. Since then they are trying to do one every 2 months (if she's

lucky enough not to have a cold or something). They are doing it nasally

also. The doc who is doing it is going in with laser and removing a tiny bit

of the bone each time to let it heal a little bit at a time so that there is

not a huge amount of scar tissue. She is breathing great through her nose

(when she's not sick), but they want to continue until it is completely open

and they want to do a study on other's who have had this procedure done and

are finished to see if as they grow the holes stay completely open. They're

hoping that doing it this was will reduce the chance of going in later to

remove scar tissue and re-open the passages.

I wish we only had to go through this once.

Kim

mom to Devin 8 yrs. and Saleah 10 mo. (CHARGE)

[Guest guest]

Casey, , Kim

Thanks for your replies. Archie also had a thick, bony atresia -- when they

first drilled it through he is whole face was black and blue and swollen.

Each time they had to change his stents (once because they fell out, twice

because he pulled at them so hard that the " u-bend " at the back got stuck

against the back of his nose) they had to drill a bit more out of his nose

to get the new stents in. The whole procedure did seem a little haphazard,

and not very well managed (Archie had to be transferred in the middle of the

night and have emergency surgery to replace the stents the first time, as

after they'd fallen out the hospital thought they'd just wait and see if

things were OK without stents -- after 5 days Archie was stopping breathing

every time he dozed off as his nose was completely blocked and he had awful

discharge the whole time, and he was really distressed).

Kim, you say you'd rather get it over and done with in one go, but maybe the

" little bit at a time " scheme is a better idea -- especially if Saleah

doesn't have to have stents and suctioning for weeks at a time. If I knew

then what I know now, I think I would ahve asked the docs about this

approach.

BTW -- yes, Archie is still under an ENT surgeon, but he has had nothing to

do with Archie's nose -- it is the general paedicatric surgeons at

Southampton who deal with choanal atresia.

I hope Saleah and Kennedy's procedures go really well.

, Simon and Archie CHARgE 13 months

Southampton UK

PS Casey I do remember having an atresia repair -- didn't he have to

have one stent in? Poor little mite -- I wouldn't wish nasal stents on

anyone!

[Guest guest]

andrea,

T6he first time they did the surg he had stents in for 6

months.. that one never bothered him except he was too

thrilled about having it washed and suctioned but would

let me do it.

The stent last summer tho was a whole different thing..

two days after surgery we were in the clinic with and

infection and fever, two days after that we were in the ER

because he'd pulled the stitches out.. three days after

that he'd even pulled those stitches out and that time

pulled the stent out.. Was supposed to have it three

months and ended up having it 8 days.. but he's still

doing fine with now.. We are off to the ENT this morn.

Casey

charge@...

minnow@...

Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE.

Cobb California

ICQ UIN# 728514

AIM Buddy List: ZeeCasey

[Guest guest]

In a message dated 3/18/99 5:29:20 AM Eastern Standard Time, sirb@...

writes:

<< PS Casey I do remember having an atresia repair -- didn't he have to

have one stent in? Poor little mite -- I wouldn't wish nasal stents on

anyone!

>>

I don't know if it's the same thing, but I had a deviated septum fixed, and if

having an atresia repair is worse than that I wouldn't wish it on anyone

either!

Janet