Re: Update (not so positive)

[Guest guest]

Thank you to everyone for your prayers. Saleah is doing pretty good. We're

home now and things are so far so good. We now have an apnea monitor for

sleeping time. The worst part of this is it didn't happen while she was

asleep. She was playing with her toys. It's very scary not to have a reason

but we do know that moving her around and getting her upset made her breath

again and pink up and that oxygen was the key factor in getting it to really

stop.

I'll keep you all posted.

Kim

mom to Devin 7 3/4 yrs. and Saleah 5 mo. (CHARGE)

[Guest guest]

Kim,

I'm glad Saleah is home now! It is very scary what you have been

experiencing this week. Along with the other moms who have said their

CHARGEr has apnea, I will add Kendra, too. She only a few times obstructed

her airway when awake, but it has happened. There is a mom on this list

(and I'm sorry I can't remember who) who's child has apnea even when awake.

The times Kendra has obstructed in addition to sleep apnea (obstructive and

central) are times when her trachea flopped closed, times when food went

directly to the lungs, times when she had laryngospasm due to an irritant

to the airway, and once when she appeared to be hypoglycemic and she

responded positively right away to getting a feeding. She slept with a

heart monitor until she was about 6 years old.

Kendra had a trach for several years due to all these problems, but when

she had the trach out she started having sleep apnea. The ways we have

dealt with the sleep apnea have been oxygen at night and now a CPAP

machine. We have never tried Beconase but it sounds like a very good

option.

I am trying to give you ideas that I hope will help you rule out some of

these possibilities. One time my son who does not have CHARGE stopped

breathing when he was very little and the doctor said it was because he had

mucous stuck in his throat and wasn't big or strong enough to cough it out.

It never happened again with him.

Please let us all know how you, Devon and Saleah are doing. Did they give

you reassurances that will allow you to relax a little bit? I know how

hard it is to watch a child every minute to be sure they are breathing. If

they suggest you watch all the time, I think they will need to supply you

with a nurse because you need and deserve breaks.

Take good care, and we're thinking of you.

Mom to Kenda, 12 CHARGE, , 18 and Camille, 20

Portland, OR

[Guest guest]

,

Thank you for your thoughts. This has not happened again since Tuesday night

when they put the oxygen on her. She was starting to sound stuffy for about 2

days before this and I thought she was getting a cold, but never got a runny

nose or fever and was still happy as could be. They said this may have had

something to do with it especially because of her choanal atresia. Since

she's only had 3 surgeries on it and it's still not completely open they

thought maybe she got too stuffy and couldn't breathe through her nose and her

brain didn't respond to open her mouth. As long as she was crying she was

fine but the minute she calmed down and shut her mouth she stopped again.

I am watching her all the time. I feel safe with the apnea monitor at night

so that I can get some sleep, but during the day we're together all the time

anyways. I don't feel comfortable having someone else come in and watch her

for me. If I get to where I really need a break my mom is very good about

taking care of her and she knows what to do with her. I've been very

fortunate to have her close to us. She's gone to the hospital with me every

time she's been there, she tries to go to doctor appts (which doesn't work all

the time because of her work schedule) and her surgeries. She's been good to

have around.

Well, you take care and I'll let you know if we find anything else out.

Kim

mom to Devin 7 3/4 yrs. and Saleah 5 mo. (CHARGE)

[Guest guest]

,

Saleah would stop until I would move her around enough to make her cry again.

She has choanal atresia and also had to learn to breathe through her mouth,

but since July when she had her second surgery she's been able to breathe

through her nose and has stopped breathing through her mouth. It's scary to

think that she has lost that sense to open her mouth if she's not getting air

through her nose. All I can do now is wait and see how things go from here.

The doctors said we may never have this happen again and never know what

caused it.

Kim

mom to Devin 7 3/4 yrs. and Saleah 5 mo. (CHARGE)

[Guest guest]

Kim,

May you never need it, but I have an " oral airway " which goes into their

mouth like a soother with a hole in the front. This MAKES them keep

their mouth open. Maybe you could ask your doc about one, just in case

you had a situation where you couldn't get her to open her mouth <this

has happened to us> You can pop that in and she will have an open

airway until you can get her to the hospital or wherever. Just a

thought.

Mom to Kennedy 8 mos old CHARGEr, 9, 7, and wife to Graeme

New Brunswick, Canada

--

Graeme & Weir

gweir@...

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

[Guest guest]

,

We actually had the doctors take the hard Gerber pacifiers and we cut holes in

the end of them to use as an airway before she had the surgery for the choanal

atresia. We also had the cranio-facial people make a retainer for her that

actually poligrips to the roof of her mouth and has a small tube that sticks

out the front so that she can breathe with her mouth shut. She had to wear

this all the time at first and then just when she slept (now not at all). It

works great. It was kind of an experiment that they did and I talked with the

woman who made it on Friday and she said they've made so many since that one

and they were taking it to a meeting with all the ENT doctors to see if it's

something they can use on a regular basis now.

Thanks

Kim

mom to Devin 7 3/4 yrs. and Saleah 5 mo. (CHARGE)

[Guest guest]

Kim,

That sounds neat, I'd love to see a picture of that if you've got one,

and could send it to me. Graeme kind of invented something to help

Kennedy with the oral airway thing. He sliced two small slits on either

side of the opening and ran trach ties through them so that they came

out in two pieces and we tied one up around the crown of her head and

one around her neck, like a dust mask, or a welder's mask. This was

great and was alot better than taping it with a mass of tape around her

face. The docs and nurses thought it was just great. <doesn't take

much to impress them though!>...

--

Graeme & Weir

gweir@...

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

[Guest guest]

In a message dated 98-10-28 22:53:18 EST, you write:

<< That sounds neat, I'd love to see a picture of that if you've got one,

and could send it to me >>

,

I do have a picture of it. I'd be happy to send one to you.

Kim

mom to Devin 7 3/4 yrs. and Saleah 5 1/2 mo, (CHARGE)