Re: Amelie going to THEATRE!! OMG

[Guest guest]

Oh Lesley,

The more aggrevated U are-the funnier things U say !!! U mess me all up-

I'm trying to give U a serious answer and I can't stop giggling...

re: neuro issue. I believe they are saying that she may have the good old

discordinate

suck/swallow/breath that chargers like to present with..

The broncoscopy will tell U if there are any irregularities which might

cause her to aspirate.

One of the common findings is a weak (floppy) esophageal flap. Plus U'll

know if there are any obstructions.

They put in a J-tube??? but not the fundo. Is that right? and her lungs are

clear?

If all that's true, you might be good to go.

Oh-and those darned secretions-did they ever determine choanal atresia-did

they do anything about it? (Not that it helps anyway, especially when they

are babies)

I swear-even now, both (20 yrs old) and I wish we had that suction

machine back, just to clear things out !

I don't dare say anything else-cuz it might all be wrong (Uknow what I

mean???)

U must be in shock-

If I've got the jtube right-let me know-I could probably safely go on.

[Guest guest]

Dear Lesley,

No dear, I don't believe excessive snot leads to mental retardation.

And the minute I can control myself (convulsive laughter).....I'll be right

back.

Love ya lots,

[Guest guest]

Exessive secreations a mental thing my BUTT! i work in a child care

place. We got lots of really smart kids who are some of

the " snottyist " ive ever seen. Our little Down Syndrom baby dosnt even

have as much secretions (snot and drool) as some of the medicaly sound

kids!

Sorry, i had to have a little laugh there

Hope all is well though.

Chantelle

[Guest guest]

Chantelle

thats the best news of my worried day I thought omg she is

definately mentally retarded and the secretions is how they know,

and thats why they havent bothered with a MRI scan,

thank you so much

love the MY BUTT you remind me of me!!

Love Lesley xxxx

>

> Exessive secreations a mental thing my BUTT! i work in a child

care

> place. We got lots of really smart kids who are some of

> the " snottyist " ive ever seen. Our little Down Syndrom baby dosnt

even

> have as much secretions (snot and drool) as some of the medicaly

sound

> kids!

>

> Sorry, i had to have a little laugh there

>

>

> Hope all is well though.

>

>

> Chantelle

>

[Guest guest]

Dear

at least I raise smiles for you guys I am as misserable as s..t

today.

seriously she has a gastrostomy mic=key button but they took the

short one out and put a new mic-key miles longer back in the same

hole in her stomach, then on camera they messed about until they

pushed it to the jejunum, does that sound average or feasible i

think thats what happened. then they gradually got her back onto

full feed mind you she has lost more weight, thats worrying me.

they never got an ENT to see her before today, in fact no ones ever

mentioned them before until i stuck a list of throat problems in

front the other day and asked the respiratory has she got any of

these, no wonder she looked odd back at me,

but she cant have choanal atresia becasue they would have found

this at birth surely, and we passed Nasal tubes and suction

catheters down her nostrils to feed her in the early days and to

suction still to this day, however the right nostril was much

smaller cosmetically in the early days. all those bloody tubes have

stretched it!!

are you still with me??? i hope yore keeping up !!!!

now then are you saying still has lots of secretions and if

so i hate to ask this question but, how is she neuro wise?? how

many are mentally retarded in the kids you know ??? should i

prepare myself for bad news on the neuro front becasue she has bad

secretions, is this a sign or not????

sorry to be so upfront, i am cringing as i post this

Love Lesley frantic Chan for a change!!

>

> Oh Lesley,

> The more aggrevated U are-the funnier things U say !!! U mess me

all up-

> I'm trying to give U a serious answer and I can't stop giggling...

> re: neuro issue. I believe they are saying that she may have the

good old

> discordinate

> suck/swallow/breath that chargers like to present with..

> The broncoscopy will tell U if there are any irregularities which

might

> cause her to aspirate.

> One of the common findings is a weak (floppy) esophageal flap.

Plus U'll

> know if there are any obstructions.

> They put in a J-tube??? but not the fundo. Is that right? and her

lungs are

> clear?

> If all that's true, you might be good to go.

> Oh-and those darned secretions-did they ever determine choanal

atresia-did

> they do anything about it? (Not that it helps anyway,

especially when they

> are babies)

> I swear-even now, both (20 yrs old) and I wish we had that

suction

> machine back, just to clear things out !

> I don't dare say anything else-cuz it might all be wrong (Uknow

what I

> mean???)

> U must be in shock-

> If I've got the jtube right-let me know-I could probably safely

go on.

>

>

>

>

[Guest guest]

Lesley,

A lot has happened with Amelie, and I am only going to comment on the parts

that I know something about.

As far as the anesthetic worries go, you do want to minimize the number of

times she has GA, but if she needs a procedure she needs it. If procedures can

be combined to do several with one anesthetic, that's the best. And it sounds

like that is what they are doing, with the brochoscopy and putting the tubes in

her ears. Sometimes, they can't combine procedures, if one is on a part of the

body that's considered " dirty " (the mouth for example). Putting the tubes (or

grommets) in her ears is a good thing. If she has had a hearing test (like the

BAER), it isn't completely reliable if any fluid is present in the ears. So

they will repeat it after the tubes have been put in. When they do the scope

under anesthesia, they will be able to get a much better look. They may be

looking for something called a laryngeal cleft. My son Evan also has a very

soft cry and his cooing is more like a " grrrrrr " -ing. We saw our ENT Dr. on

Monday. They want to scope him under anesthesia as well

and look for that cleft when he gets his tubes in his ears (he has fluid too).

The ENT didn't tell me if that would cause voice problems, but I'm just guessing

that it could have an impact.

As far as the secretion acumulation goes, you can't assume that means Amelie

has brain damage. The reason why they say not swallowing is a neurologic

problem is because swallowing is controlled by a couple nerves that start in the

brain stem. They are called crainial nerves, and there are 12 pairs; different

nerves control different things--one controlls smell, 3 control eye movements,

one controls the muscles that make facial expressions, one controls hearing and

balance, and there are others that control other things. For some reason in

CHARGE (and I have yet to get a satisfactory explanation for this from anyone),

it is very common to have cranial nerves that either don't work well (a palsy)

or can be missing, or aren't in the same places they are found in most people.

It may or may not be possible to see a cranial nerve problem with an MRI. My

son had one done, and nothing abnormal was found (and he has some cranial nerve

problems for sure). A neurologist will be quick to

tell you that the younger a patient is, the more difficult it is to interpret

the MRI test. And just because the MRI looks normal, it doesn't mean there are

no problems with the brain (there can still be cognative impairment).

I don't know if this is helping you at all, but try not to worry too much. I

think it's great that Amelie's getting something done to help her so quickly.

Hugs,

(mom to CHARGEr Evan, 6 months (4 months adjusted))

Lesley Chan wrote:

Dear all

A strange thing today.

The respiratory team said she could go home Monday!! until her

dissociation which will be around March time I know for sure we are

waiting for Bianchi to get us in, and hes a very busy man.this is also

good for her lungs and we will be going into spring time so i feel ok

with March time.

The resiratory team had been mithering ENT to see Amelie especially

about aspiration and the fact that we said we had been asking to see

one for over six months and they had only just acknowledge her.

this afternoon, the ENT finally showed up, asked some questions looked

at her, went away said hed be back later when he had chatted to the

top one in their department.

I went to the canteen for food, and when i got back he had already

been back with this top doc and they both looked at her, in the

communication book for parents i read 'surgery Monday theatre for

Broncoscopy think thats how its spelt, and a note saying he would come

back later to talk to parents.

I was panic stricken, we sat all afternoon, finally saw him 7pm

tonight, he said they are taking her to theatre Monday, to do a camera

down her throat, to drain fluid from behind the ear drums, and insert

grommits, ive read that on here somewhere that word grommits, to drain

the fluid, and to look at her voice box and throat, she does have a

very course voice and dull cry very silent cry really you could

mistake it for a little whimper.

I complained that she is one and has never had hearing aids so they

are looking at a band but not the surgical one, know nothing about

this.

I asked would doing this lot help reduce her secretion problems i dont

know how a child can create so much snot!! he said no this is a

neurological issue......What does he mean, has she got the secretion

problem due to something wrong with the brain, i only saw the

neorollogy once when she was 6 weeks old, and no ones commented

further since then. she hasnt had an MRI scan does this mean she will

be mentally retarded ifshe has secretion problems????

WHAT I DONT UNDERSTAND IS WHY MONDAY SO SOON WHEN THEY HAVE WAITING

LISTS MASSIVE FOR ENT, HE WOULDNT ELABOURATE ANY WHEN I PRESSED HIM,

HE SAID HE DID NOT WANT TO SPECULATE UNTIL HE WAS DONE WITH HER.

ALSO THE RESPIRATORY SAID SHE WAS NOT SAFE TO HAVE GA YET FOR

DISSOCIATION, NOW ALL OF SUDDEN ITS OK TO HAVE GA, IREAD LAST NIGHT

DOING MY STUDY FOR SCHOOL THE MORTALITY RATES INCREASE WITH THE MORE

GA'S ESPECIALLY IN THOSE WHO ASPIRATE I FEEL FRANTIC WITH NERVES AGAIN

NOW, I WAS SO EXITED THIS MORNING THOUGHT SHE WAS COMING HOME AND ALL

THAT,

DO YOU THINK THEY THINK SHE HAS GOT SOMETHING TERRIBL, WHAT COULD SHE

HAVE WRONG IN THE UPPER TRACT AREA, CAN THEY FIX STUFF WHILST THERE

DOWN THERE?????

NEED ANSWERS FOLKES

lOVE AND WORRIED LESLEY

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or email

info@... .

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Lesley,

I am so new at all this CHARGE stuff and I wish I had more answers

for you. I know there are some wonderful people on here that I am

sure will help you and may have answers. I will keep praying and I

hope everything goes well. Hugs to you and Amelie!!

Crystal and Eva (9 month charger)

>

> Dear all

>

> A strange thing today.

>

> The respiratory team said she could go home Monday!! until her

> dissociation which will be around March time I know for sure we

are

> waiting for Bianchi to get us in, and hes a very busy man.this is

also

> good for her lungs and we will be going into spring time so i feel

ok

> with March time.

> The resiratory team had been mithering ENT to see Amelie

especially

> about aspiration and the fact that we said we had been asking to

see

> one for over six months and they had only just acknowledge her.

>

> this afternoon, the ENT finally showed up, asked some questions

looked

> at her, went away said hed be back later when he had chatted to

the

> top one in their department.

> I went to the canteen for food, and when i got back he had already

> been back with this top doc and they both looked at her, in the

> communication book for parents i read 'surgery Monday theatre for

> Broncoscopy think thats how its spelt, and a note saying he would

come

> back later to talk to parents.

>

> I was panic stricken, we sat all afternoon, finally saw him 7pm

> tonight, he said they are taking her to theatre Monday, to do a

camera

> down her throat, to drain fluid from behind the ear drums, and

insert

> grommits, ive read that on here somewhere that word grommits, to

drain

> the fluid, and to look at her voice box and throat, she does have

a

> very course voice and dull cry very silent cry really you could

> mistake it for a little whimper.

>

> I complained that she is one and has never had hearing aids so

they

> are looking at a band but not the surgical one, know nothing about

> this.

>

> I asked would doing this lot help reduce her secretion problems i

dont

> know how a child can create so much snot!! he said no this is a

> neurological issue......What does he mean, has she got the

secretion

> problem due to something wrong with the brain, i only saw the

> neorollogy once when she was 6 weeks old, and no ones commented

> further since then. she hasnt had an MRI scan does this mean she

will

> be mentally retarded ifshe has secretion problems????

>

> WHAT I DONT UNDERSTAND IS WHY MONDAY SO SOON WHEN THEY HAVE

WAITING

> LISTS MASSIVE FOR ENT, HE WOULDNT ELABOURATE ANY WHEN I PRESSED

HIM,

> HE SAID HE DID NOT WANT TO SPECULATE UNTIL HE WAS DONE WITH HER.

>

> ALSO THE RESPIRATORY SAID SHE WAS NOT SAFE TO HAVE GA YET FOR

> DISSOCIATION, NOW ALL OF SUDDEN ITS OK TO HAVE GA, IREAD LAST

NIGHT

> DOING MY STUDY FOR SCHOOL THE MORTALITY RATES INCREASE WITH THE

MORE

> GA'S ESPECIALLY IN THOSE WHO ASPIRATE I FEEL FRANTIC WITH NERVES

AGAIN

> NOW, I WAS SO EXITED THIS MORNING THOUGHT SHE WAS COMING HOME AND

ALL

> THAT,

>

> DO YOU THINK THEY THINK SHE HAS GOT SOMETHING TERRIBL, WHAT COULD

SHE

> HAVE WRONG IN THE UPPER TRACT AREA, CAN THEY FIX STUFF WHILST

THERE

> DOWN THERE?????

>

> NEED ANSWERS FOLKES

>

> lOVE AND WORRIED LESLEY

>

[Guest guest]

Ahhh, Lesley, now I see where the gromets question came from. I won't

answer too many of your questions as am on last legs and not really thinking

all that clearly and I see has done quite a good job. As far as the

secretions go, I agree with Chantelle's analysis, butt and all!!! Our

and her secrections variously has led us to consider shares in

Kleenex and yes, she has a developmental delay consistent with her

multisensory impairments and she is slower than a typical child but so far,

no evidence of mental impairment (or as the Americans say and sorry my

U.Sfriends, I hate this term, mental retardation). She gets there,

just that

bit slower. She has been one hell of a snotty child for most of her life.

Amelie may not have a formal choanal atresia diagnosis but have they

considered choanal stenosis? Strictly speaking, had choanal

stenosis but as it was bilateral, she needed surgery. Stenosis refers to

membranous rather than bony blockage and it may only be partial blockage,

enough perhaps to restrict tube entry? had very tiny choanal holes

at birth so still needed surgery to breathe. They found her out quickly as

they could not pass NG tubes so she had OG ones instead. There are odd

times when choanal stuff is not discovered until later as it may be

membranous and not severe enough to restrict breathing too much. Have a

look and ask ENT about this as it may still account for the snots. Also, it

may be that airways are smaller than would otherwise be expected. Now I am

rambling. Am soooo tired! It is very late. Please someone else chime in

here.

Anyways, on the question of gromets and draining fluid from behind her

eardrum. Neither of these is an emergency procedure so I am guessing that

the bronchoscopy must be more urgent. I am also guessing that they want to

do the gromets and draining (pretty much one and the same procedure) as they

are already with her for bronchoscopy and want to perform as many procedures

under one GA as possible, which is a good thing. was actually due

for the gromets and we asked for her to have the tonsils and adenoids

removed if necessary under the same GA to avoid more GAs later so actually,

the gromets were the more planned procedure and the others followed after.

Whenever she has needed gromets, we have tried to have at least one other

procedure with them. Lesley, the gromets are a 10 minute procedure so if

the bronchoscopy is to go ahead, gromets are nothing to worry about, might

as well have these as well. It's a good idea to let them go ahead with them

to prevent ear infections and further hearing loss but not necessarily good

for her to go under just for these if there is a question mark about her

being well enough for a GA. I seem to recall needing a bronchoscopy

at 6 months when they had concerns about her throat and thought she might

need a trach but it turned out she just had a narrow airway because of a

possible infection. If I was you, I would focus more on the bronch and why

it is required than the gromets. If the bronch is necessary, I would let

them go ahead with the gromets.

As for the band type hearing aid thing, W is the expert on this. I

believe Kennedy has lived for some time with this prior to surgery.

has sensorineural rather than conductive hearing loss so we only know about

conventional hearing aids so no help here. , am I off track yet or are

you still with me?

Lots of questions Lesley. Assume there will be a ward round tomorrow (or

later today since I am up so late?) How about finding out how safe it is

for Amelie to have the GA and balance out against the other needs (ie the

ENT urgency). I think the ENT surgeon or someone should at least explain to

you the urgency that has led to needing to do this on the day she was

scheduled for discharge. It may be that communication is not the best but

the surgeon as a specialist may have picked up something that means that the

sooner they look at Amelie the better.

As far as mental retardation goes, I would suggest try to put this at the

back of your mind for now (easier said than done I know) and worry about it

at a time such as the more urgent medical needs are ressolved. It is really

hard to evaluate this with a child with complex needs as there are so many

factors to take into account and there are no reliable measuring tools as

deafblindness, CHARGE and multisensory impairments are such low incidence

disabilities. When I feel less out of it, I will be back on this to Pat so

not bottling out entirely.

Better stop now and hopefully, you will have more ansers than questions

soon.

Hang in there, you have had a hell of a rollercoaster ride. Hopefully, your

feet will touch the ground soon.

Best.......

Flo

>

> Dear all

>

> A strange thing today.

>

> The respiratory team said she could go home Monday!! until her

> dissociation which will be around March time I know for sure we are

> waiting for Bianchi to get us in, and hes a very busy man.this is also

> good for her lungs and we will be going into spring time so i feel ok

> with March time.

> The resiratory team had been mithering ENT to see Amelie especially

> about aspiration and the fact that we said we had been asking to see

> one for over six months and they had only just acknowledge her.

>

> this afternoon, the ENT finally showed up, asked some questions looked

> at her, went away said hed be back later when he had chatted to the

> top one in their department.

> I went to the canteen for food, and when i got back he had already

> been back with this top doc and they both looked at her, in the

> communication book for parents i read 'surgery Monday theatre for

> Broncoscopy think thats how its spelt, and a note saying he would come

> back later to talk to parents.

>

> I was panic stricken, we sat all afternoon, finally saw him 7pm

> tonight, he said they are taking her to theatre Monday, to do a camera

> down her throat, to drain fluid from behind the ear drums, and insert

> grommits, ive read that on here somewhere that word grommits, to drain

> the fluid, and to look at her voice box and throat, she does have a

> very course voice and dull cry very silent cry really you could

> mistake it for a little whimper.

>

> I complained that she is one and has never had hearing aids so they

> are looking at a band but not the surgical one, know nothing about

> this.

>

> I asked would doing this lot help reduce her secretion problems i dont

> know how a child can create so much snot!! he said no this is a

> neurological issue......What does he mean, has she got the secretion

> problem due to something wrong with the brain, i only saw the

> neorollogy once when she was 6 weeks old, and no ones commented

> further since then. she hasnt had an MRI scan does this mean she will

> be mentally retarded ifshe has secretion problems????

>

> WHAT I DONT UNDERSTAND IS WHY MONDAY SO SOON WHEN THEY HAVE WAITING

> LISTS MASSIVE FOR ENT, HE WOULDNT ELABOURATE ANY WHEN I PRESSED HIM,

> HE SAID HE DID NOT WANT TO SPECULATE UNTIL HE WAS DONE WITH HER.

>

> ALSO THE RESPIRATORY SAID SHE WAS NOT SAFE TO HAVE GA YET FOR

> DISSOCIATION, NOW ALL OF SUDDEN ITS OK TO HAVE GA, IREAD LAST NIGHT

> DOING MY STUDY FOR SCHOOL THE MORTALITY RATES INCREASE WITH THE MORE

> GA'S ESPECIALLY IN THOSE WHO ASPIRATE I FEEL FRANTIC WITH NERVES AGAIN

> NOW, I WAS SO EXITED THIS MORNING THOUGHT SHE WAS COMING HOME AND ALL

> THAT,

>

> DO YOU THINK THEY THINK SHE HAS GOT SOMETHING TERRIBL, WHAT COULD SHE

> HAVE WRONG IN THE UPPER TRACT AREA, CAN THEY FIX STUFF WHILST THERE

> DOWN THERE?????

>

> NEED ANSWERS FOLKES

>

> lOVE AND WORRIED LESLEY

>

>

>

>

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Lesley-

You've gotten such great replies and answers to your questions. I hope this

finds you feeling rested, more secure and ready to face another ride on the

roller coaster. I must say that I also enjoyed giggles at the conversation

running over this post. If we can't keep our humor in the crazy times, how

will we ever manage to survive them??

Really, I hope you get good answers from the ENT dr about why this bronch is

so critical right now. Then, I hope it gets done and gives you good answers

about the status of all of the relative parts. Then, I hope she gets a bit

more rest and gets home. But before that, I hope those nuts at the social

service agency get their acts together and give you the support you need to

care for her at home. Eegads. I'm going nuts just reading about it all.

And there you are living it.

A few days ago, things seemed much better. Remember that?? Surely, the

roller coaster will go up and rest atop a hill for a while == long enough to

catch your breath and enjoy the view at least.

We're all here for you. And when we chuckle, we're laughing with you, not

at you. It's a joy to have you in our big family.

Oh -- I have to confirm that snot does not equal mental impairment. Think

of the genius geek with allergies... (Do you have geeks in the UK?)

[Apologies to any geniuses out there with allergies -- lov ya!]

Sending calming thoughts to you and healing strong thoughts to Amelie...

Michele W

Aubrie's mom

[Guest guest]

Lesley,

My instinct on reading your post was actually positive (believe it or not).

I have no way of knowing if this is what the ENTs are looking for, so

considered not sending this, but then decided it could give you info for

more questions to ask.

There is a type of fistula that occurs between the esophagus and the trachea

but the esophagus is intact (H-type TEF) Usually when a tracheal-esophageal

fistula is present the esophagus ends in a blind pouch (it dead ends before

the stomach.) When it dead ends obviously you find out quickly! When the

H-type is present it can be missed even into adulthood.

Symptoms are lots of pneumonias that are resistant to antibiotics, because

bits of formula make it through the fistula into the lungs. Even though

Amelie is tube fed, milk being refluxed could still make it through the

fistula.

My instinct was that if this were what it was it could be good news. It is

something that could be surgically corrected and if so she would not need

the more complicated disassociation procedure.

My hesitancy in sending this is I could be way off base, it was just an

instinct thing. I did want to send it though, because even if he finds

something besides a H-type fistula, it is not necessarily a bad thing.

Maybe he will find the answer as to why she has had such a hard time and be

able to FIX the problem.

On the secretions - when he said it is a neuro thing, he may have just meant

that the nerves are not sending the right signals to have her swallow her

own secretions, which can be a common thing with CHARGE, but it has nothing

to do with cognition.

I have to tell you that the most down I got was when Dylan was one year old,

just after he saw the neurologist. To me he had CHARGE and all things

considered he was doing great. Slower, but still learning as Flo said about

. The doctor used the term " Neurologically impaired " . It was as if

the term meant he had brain damage that was permanent and he would not be

able to learn past it. I began to see limits instead of possibilities and

for the first time since he was born I felt depressed (hopeless). If it was

permanent I could not do anything about it.

Later as Dylan was much older, I recognized all the ways Dylan is

neurologically different, but this does not mean " brain damage " . It does

not mean he cannot think and learn - he has COGNITION. For him the neuro

part is like the nervous system has some difficulty communicating with the

rest of the body - cranial nerve problems! Not telling his body how to

suck, swallow, breathe; not telling his body to cough when he aspirated -

things like that.

Only time will tell what Amelie is capable of and your answers will come

from Amelie, not the doctors.

I hope she has a happy, playful weekend out of the ICU and that Monday

answers will be found with the bronchoscopy. As far as GA goes - I have

read the same article, in fact I give the article to every anesthesiologist

that works with Dylan and I am probably overly cautious about allowing

ROUTINE procedures to be done on Dylan. That being said, when there is a

clear medical need to do something now as there seems to be with Amelie I

have no problem allowing the procedure to happen. There is also a big

difference between the stomach surgery and having the bronchoscopy and tubes

put in - one is the time, much shorter and two is they are not doing major

abdominal surgery that is simply just harder on the body then having the

camera put down her airway.

I am so glad ENT finally saw her. My instinct remains strong that the ENT

will find a big piece of the puzzle that has been missing.

Hugs to you,

Kim

> Dear all

>

> A strange thing today.

>

> The respiratory team said she could go home Monday!! until her

> dissociation which will be around March time I know for sure we are

> waiting for Bianchi to get us in, and hes a very busy man.this is also

> good for her lungs and we will be going into spring time so i feel ok

> with March time.

> The resiratory team had been mithering ENT to see Amelie especially

> about aspiration and the fact that we said we had been asking to see

> one for over six months and they had only just acknowledge her.

>

> this afternoon, the ENT finally showed up, asked some questions looked

> at her, went away said hed be back later when he had chatted to the

> top one in their department.

> I went to the canteen for food, and when i got back he had already

> been back with this top doc and they both looked at her, in the

> communication book for parents i read 'surgery Monday theatre for

> Broncoscopy think thats how its spelt, and a note saying he would come

> back later to talk to parents.

>

> I was panic stricken, we sat all afternoon, finally saw him 7pm

> tonight, he said they are taking her to theatre Monday, to do a camera

> down her throat, to drain fluid from behind the ear drums, and insert

> grommits, ive read that on here somewhere that word grommits, to drain

> the fluid, and to look at her voice box and throat, she does have a

> very course voice and dull cry very silent cry really you could

> mistake it for a little whimper.

>

> I complained that she is one and has never had hearing aids so they

> are looking at a band but not the surgical one, know nothing about

> this.

>

> I asked would doing this lot help reduce her secretion problems i dont

> know how a child can create so much snot!! he said no this is a

> neurological issue......What does he mean, has she got the secretion

> problem due to something wrong with the brain, i only saw the

> neorollogy once when she was 6 weeks old, and no ones commented

> further since then. she hasnt had an MRI scan does this mean she will

> be mentally retarded ifshe has secretion problems????

>

> WHAT I DONT UNDERSTAND IS WHY MONDAY SO SOON WHEN THEY HAVE WAITING

> LISTS MASSIVE FOR ENT, HE WOULDNT ELABOURATE ANY WHEN I PRESSED HIM,

> HE SAID HE DID NOT WANT TO SPECULATE UNTIL HE WAS DONE WITH HER.

>

> ALSO THE RESPIRATORY SAID SHE WAS NOT SAFE TO HAVE GA YET FOR

> DISSOCIATION, NOW ALL OF SUDDEN ITS OK TO HAVE GA, IREAD LAST NIGHT

> DOING MY STUDY FOR SCHOOL THE MORTALITY RATES INCREASE WITH THE MORE

> GA'S ESPECIALLY IN THOSE WHO ASPIRATE I FEEL FRANTIC WITH NERVES AGAIN

> NOW, I WAS SO EXITED THIS MORNING THOUGHT SHE WAS COMING HOME AND ALL

> THAT,

>

> DO YOU THINK THEY THINK SHE HAS GOT SOMETHING TERRIBL, WHAT COULD SHE

> HAVE WRONG IN THE UPPER TRACT AREA, CAN THEY FIX STUFF WHILST THERE

> DOWN THERE?????

>

> NEED ANSWERS FOLKES

>

> lOVE AND WORRIED LESLEY

>

>

>

>

>

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

kim as allways i love your comments lesly hmmmmm maybe i was jumping the

guns lol when i said good news lol oh well hopefuly still will be more good

news and as for my friends house there was me her and this other friend god

dont knwo but i must of been having this dream where i needed to cuddle

soemone coz kept cuddling her lol you know maybe was dreaming botu you guys

never know xxxxxxxxxxxxx

>

> Lesley,

>

> My instinct on reading your post was actually positive (believe it or

> not).

> I have no way of knowing if this is what the ENTs are looking for, so

> considered not sending this, but then decided it could give you info for

> more questions to ask.

>

> There is a type of fistula that occurs between the esophagus and the

> trachea

> but the esophagus is intact (H-type TEF) Usually when a

> tracheal-esophageal

> fistula is present the esophagus ends in a blind pouch (it dead ends

> before

> the stomach.) When it dead ends obviously you find out quickly! When the

> H-type is present it can be missed even into adulthood.

>

> Symptoms are lots of pneumonias that are resistant to antibiotics, because

> bits of formula make it through the fistula into the lungs. Even though

> Amelie is tube fed, milk being refluxed could still make it through the

> fistula.

>

> My instinct was that if this were what it was it could be good news. It

> is

> something that could be surgically corrected and if so she would not need

> the more complicated disassociation procedure.

>

> My hesitancy in sending this is I could be way off base, it was just an

> instinct thing. I did want to send it though, because even if he finds

> something besides a H-type fistula, it is not necessarily a bad thing.

> Maybe he will find the answer as to why she has had such a hard time and

> be

> able to FIX the problem.

>

> On the secretions - when he said it is a neuro thing, he may have just

> meant

> that the nerves are not sending the right signals to have her swallow her

> own secretions, which can be a common thing with CHARGE, but it has

> nothing

> to do with cognition.

>

> I have to tell you that the most down I got was when Dylan was one year

> old,

> just after he saw the neurologist. To me he had CHARGE and all things

> considered he was doing great. Slower, but still learning as Flo said

> about

> . The doctor used the term " Neurologically impaired " . It was as

> if

> the term meant he had brain damage that was permanent and he would not be

> able to learn past it. I began to see limits instead of possibilities and

> for the first time since he was born I felt depressed (hopeless). If it

> was

> permanent I could not do anything about it.

>

> Later as Dylan was much older, I recognized all the ways Dylan is

> neurologically different, but this does not mean " brain damage " . It does

> not mean he cannot think and learn - he has COGNITION. For him the neuro

> part is like the nervous system has some difficulty communicating with the

> rest of the body - cranial nerve problems! Not telling his body how to

> suck, swallow, breathe; not telling his body to cough when he aspirated -

> things like that.

>

> Only time will tell what Amelie is capable of and your answers will come

> from Amelie, not the doctors.

>

> I hope she has a happy, playful weekend out of the ICU and that Monday

> answers will be found with the bronchoscopy. As far as GA goes - I have

> read the same article, in fact I give the article to every

> anesthesiologist

> that works with Dylan and I am probably overly cautious about allowing

> ROUTINE procedures to be done on Dylan. That being said, when there is a

> clear medical need to do something now as there seems to be with Amelie I

> have no problem allowing the procedure to happen. There is also a big

> difference between the stomach surgery and having the bronchoscopy and

> tubes

> put in - one is the time, much shorter and two is they are not doing major

> abdominal surgery that is simply just harder on the body then having the

> camera put down her airway.

>

> I am so glad ENT finally saw her. My instinct remains strong that the ENT

> will find a big piece of the puzzle that has been missing.

>

> Hugs to you,

>

> Kim

>

>

>

> > Dear all

> >

> > A strange thing today.

> >

> > The respiratory team said she could go home Monday!! until her

> > dissociation which will be around March time I know for sure we are

> > waiting for Bianchi to get us in, and hes a very busy man.this is also

> > good for her lungs and we will be going into spring time so i feel ok

> > with March time.

> > The resiratory team had been mithering ENT to see Amelie especially

> > about aspiration and the fact that we said we had been asking to see

> > one for over six months and they had only just acknowledge her.

> >

> > this afternoon, the ENT finally showed up, asked some questions looked

> > at her, went away said hed be back later when he had chatted to the

> > top one in their department.

> > I went to the canteen for food, and when i got back he had already

> > been back with this top doc and they both looked at her, in the

> > communication book for parents i read 'surgery Monday theatre for

> > Broncoscopy think thats how its spelt, and a note saying he would come

> > back later to talk to parents.

> >

> > I was panic stricken, we sat all afternoon, finally saw him 7pm

> > tonight, he said they are taking her to theatre Monday, to do a camera

> > down her throat, to drain fluid from behind the ear drums, and insert

> > grommits, ive read that on here somewhere that word grommits, to drain

> > the fluid, and to look at her voice box and throat, she does have a

> > very course voice and dull cry very silent cry really you could

> > mistake it for a little whimper.

> >

> > I complained that she is one and has never had hearing aids so they

> > are looking at a band but not the surgical one, know nothing about

> > this.

> >

> > I asked would doing this lot help reduce her secretion problems i dont

> > know how a child can create so much snot!! he said no this is a

> > neurological issue......What does he mean, has she got the secretion

> > problem due to something wrong with the brain, i only saw the

> > neorollogy once when she was 6 weeks old, and no ones commented

> > further since then. she hasnt had an MRI scan does this mean she will

> > be mentally retarded ifshe has secretion problems????

> >

> > WHAT I DONT UNDERSTAND IS WHY MONDAY SO SOON WHEN THEY HAVE WAITING

> > LISTS MASSIVE FOR ENT, HE WOULDNT ELABOURATE ANY WHEN I PRESSED HIM,

> > HE SAID HE DID NOT WANT TO SPECULATE UNTIL HE WAS DONE WITH HER.

> >

> > ALSO THE RESPIRATORY SAID SHE WAS NOT SAFE TO HAVE GA YET FOR

> > DISSOCIATION, NOW ALL OF SUDDEN ITS OK TO HAVE GA, IREAD LAST NIGHT

> > DOING MY STUDY FOR SCHOOL THE MORTALITY RATES INCREASE WITH THE MORE

> > GA'S ESPECIALLY IN THOSE WHO ASPIRATE I FEEL FRANTIC WITH NERVES AGAIN

> > NOW, I WAS SO EXITED THIS MORNING THOUGHT SHE WAS COMING HOME AND ALL

> > THAT,

> >

> > DO YOU THINK THEY THINK SHE HAS GOT SOMETHING TERRIBL, WHAT COULD SHE

> > HAVE WRONG IN THE UPPER TRACT AREA, CAN THEY FIX STUFF WHILST THERE

> > DOWN THERE?????

> >

> > NEED ANSWERS FOLKES

> >

> > lOVE AND WORRIED LESLEY

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Membership of this email support groups does not constitute membership

> in the

> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome

> Canada

> > information and membership, please visit http://www.chargesyndrome.ca or

> email

> > info@... .

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

> > www.chargesyndrome.org or by calling 1-.

> >