Re: Amélie Bipap or Trach ...help PLEASE

[Guest guest]

Hi Les,

My opinion: start with bipap. If it works, great. If it doesn't, then

move to

trach. They wouldn't look at a trach as a short term option, I don't

believe.

Weighty stuff, I know,

Have a hug ((( ))),

in Ma.

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi Lesley,

One more word. (oh-we'd be lucky at that, wouldn't we-lol) One more for the

moment,

to be accurate.

---

was " born " to life three months after her birth, on the day they

trached her.

There was no single thing to point to as to why she needed it. She had had

one atresia

repair that helped nose breathing some, and one heart surgery for everything

there.

She was already on hyperal, then ng feeds due to aspiration.

If that turns out to be the best answer for Amelie, don't worry. It's

nothing you can't

handle. It quickly gets to be " old hat " , " piece of cake " , and it easily

might be a big

blessing for her.

You know, we went from being totally freaked out as the resident danced

around the

room with the trach in his hand to prove we didn't have to panic to get it

in, to

actually suctioning herself sometimes. That was a hoot.

We had her in the pool, surrounded, which she loved, and in and having fun.

She played t-ball with it,

in the sandbox, riding ponies...etc. There are ways. And, if you smile

when you're out, the world will smile

with you, with or without a new silver " necklace " .

You know..... if she needs it-you'll do it-and you'll do it great!

;-)

in Ma.

************************************** See what's free at http://www.aol.com.

[Guest guest]

Dear Les,

I see you are considering important issues.

One question I have is, what is causing the breathing difficulty? Is it

primarily lung complications? Or is the cause unknown at this time?

Kendra also did not see much improvement from tonsillectomy and partial

adenoidectomy.

She continued to thrilve with a nasal canula of oxygen at night. Finally as she

has gotten bigger, her night-time breathing has improved.

She had a tracheotomy for her first three years. Once her double aortic arch

was identified and repaired, she was able to be decannulated from the trach.

Her double aortic arch was difficult for some ENT and Cardiology specialists to

see. Once it was identified, there was a dramatic understanding of her

difficulties and a way to address them.

while this kind of difficulty may not be Ame'lie's difficulty, I am curious what

exactly the nature of the problem is.

Mom to Kendra, and Camille

Amélie Bipap or Trach ...help PLEASE

Hi All

We are going to a meeting on the 6th June.

Amélies post op recovery has gone fantastically well, but has not made the

slightest

difference to her desats and airway issues.

I know this meeting is to address where we go from here?

I have never really read the trach posts as we dont have one, and I know its

ignorant of me, but in the early years you are too overwhelmed with the

parts of

CHARGE you know your child has.

So my question is...to those with bipap or tracheostomy...can you give me

the pros and cons

before we go to this meeting so I feel prepared and know what to ask.

many thanks Les x

[Guest guest]

good luck with everything--sorry I have no advice but wishes for the best

maria

Amélie Bipap or Trach ...help PLEASE

Hi All

We are going to a meeting on the 6th June.

Amélies post op recovery has gone fantastically well, but has not made the

slightest

difference to her desats and airway issues.

I know this meeting is to address where we go from here?

I have never really read the trach posts as we dont have one, and I know its

ignorant of me, but in the early years you are too overwhelmed with the

parts of

CHARGE you know your child has.

So my question is...to those with bipap or tracheostomy...can you give me

the pros and cons

before we go to this meeting so I feel prepared and know what to ask.

many thanks Les x

[Guest guest]

I really am not sure of what the issues are, I believe from what I can see

when she has these major

desats lowest being 36 that her tongue is at the very back of her mouth,

there are noises in her throat,

as if she is trying to breath, and her diagphram region is moving up and

down, so I think her tongue is occluding.

I do not have this confirmed by her team. Amélie is in 2 litres oxygen 24/7

for her chronic lung disease which she has had

since her two pulmonary arrests in Dec 05, we dont seem to be able to ween

her from the O2.

Amélie has had pulmonary hypertension, has cardiomyopathy and an outstanding

ASD (PDA ligated)

if this makes anything clearer to you.

Also the bulbar dysphagia, facial palsy slight, and 2 failed

videofluroscopy.

I would say her lungs since the RSV positive bronchiolitis have been her

worst issue.

appreciate your advice let me know what you think if anything hugs Les x

>

> Dear Les,

>

> I see you are considering important issues.

>

> One question I have is, what is causing the breathing difficulty? Is it

> primarily lung complications? Or is the cause unknown at this time?

>

> Kendra also did not see much improvement from tonsillectomy and partial

> adenoidectomy.

>

> She continued to thrilve with a nasal canula of oxygen at night. Finally

> as she has gotten bigger, her night-time breathing has improved.

>

> She had a tracheotomy for her first three years. Once her double aortic

> arch was identified and repaired, she was able to be decannulated from the

> trach.

>

> Her double aortic arch was difficult for some ENT and Cardiology

> specialists to see. Once it was identified, there was a dramatic

> understanding of her difficulties and a way to address them.

>

> while this kind of difficulty may not be Ame'lie's difficulty, I am

> curious what exactly the nature of the problem is.

>

>

> Mom to Kendra, and Camille

> Amélie Bipap or Trach ...help PLEASE

>

> Hi All

>

> We are going to a meeting on the 6th June.

>

> Amélies post op recovery has gone fantastically well, but has not made the

> slightest

> difference to her desats and airway issues.

>

> I know this meeting is to address where we go from here?

>

> I have never really read the trach posts as we dont have one, and I know

> its

> ignorant of me, but in the early years you are too overwhelmed with the

> parts of

> CHARGE you know your child has.

>

> So my question is...to those with bipap or tracheostomy...can you give me

> the pros and cons

> before we go to this meeting so I feel prepared and know what to ask.

>

> many thanks Les x

>

>

[Guest guest]

Thanks the hugs are received and welcomed xxx les

>

> Hi Les,

>

> My opinion: start with bipap. If it works, great. If it doesn't, then

> move to

> trach. They wouldn't look at a trach as a short term option, I don't

> believe.

>

> Weighty stuff, I know,

> Have a hug ((( ))),

> in Ma.

>

> ************************************** See what's free at

> http://www.aol.com.

>

>

[Guest guest]

> Les,

Although we did not experience this personally, I am more inclined to go

with what others have said, it's worth a try for the bipap first in my

opinion before heading down the trach route. They didn't want to do a

g-tube with Kennedy, just straight to a j-tube and I fought them hard (and

obvioulsy won) and in the end it was a good decision. I felt that I was

willing to take the risk of the g tube/fundo not working out first then if

we HAD to do the J-tube we would. I know it's a different part of the

anatomy; just remember though, that the decision is yours.

Kennedy's Mom

www.chargesyndrome.info

>

>

>

> I really am not sure of what the issues are, I believe from what I can see

> when she has these major

> desats lowest being 36 that her tongue is at the very back of her mouth,

> there are noises in her throat,

> as if she is trying to breath, and her diagphram region is moving up and

> down, so I think her tongue is occluding.

>

> I do not have this confirmed by her team. Amélie is in 2 litres oxygen

> 24/7

> for her chronic lung disease which she has had

> since her two pulmonary arrests in Dec 05, we dont seem to be able to ween

> her from the O2.

>

> Amélie has had pulmonary hypertension, has cardiomyopathy and an

> outstanding

> ASD (PDA ligated)

> if this makes anything clearer to you.

>

> Also the bulbar dysphagia, facial palsy slight, and 2 failed

> videofluroscopy.

>

> I would say her lungs since the RSV positive bronchiolitis have been her

> worst issue.

>

> appreciate your advice let me know what you think if anything hugs Les x

>

> On 30/05/07, Keedy wkeedy@... >

> wrote:

> >

> > Dear Les,

> >

> > I see you are considering important issues.

> >

> > One question I have is, what is causing the breathing difficulty? Is it

> > primarily lung complications? Or is the cause unknown at this time?

> >

> > Kendra also did not see much improvement from tonsillectomy and partial

> > adenoidectomy.

> >

> > She continued to thrilve with a nasal canula of oxygen at night. Finally

> > as she has gotten bigger, her night-time breathing has improved.

> >

> > She had a tracheotomy for her first three years. Once her double aortic

> > arch was identified and repaired, she was able to be decannulated from

> the

> > trach.

> >

> > Her double aortic arch was difficult for some ENT and Cardiology

> > specialists to see. Once it was identified, there was a dramatic

> > understanding of her difficulties and a way to address them.

> >

> > while this kind of difficulty may not be Ame'lie's difficulty, I am

> > curious what exactly the nature of the problem is.

> >

> >

> > Mom to Kendra, and Camille

> > Amélie Bipap or Trach ...help PLEASE

> >

> > Hi All

> >

> > We are going to a meeting on the 6th June.

> >

> > Amélies post op recovery has gone fantastically well, but has not made

> the

> > slightest

> > difference to her desats and airway issues.

> >

> > I know this meeting is to address where we go from here?

> >

> > I have never really read the trach posts as we dont have one, and I know

> > its

> > ignorant of me, but in the early years you are too overwhelmed with the

> > parts of

> > CHARGE you know your child has.

> >

> > So my question is...to those with bipap or tracheostomy...can you give

> me

> > the pros and cons

> > before we go to this meeting so I feel prepared and know what to ask.

> >

> > many thanks Les x

> >

> >

[Guest guest]

no advice is fine...value you your wishes immensly

I wish sometimes i had a crystal ball!!

hugs Les x

>

> good luck with everything--sorry I have no advice but wishes for the

> best

>

> maria

> Amélie Bipap or Trach ...help PLEASE

>

> Hi All

>

> We are going to a meeting on the 6th June.

>

> Amélies post op recovery has gone fantastically well, but has not made the

> slightest

> difference to her desats and airway issues.

>

> I know this meeting is to address where we go from here?

>

> I have never really read the trach posts as we dont have one, and I know

> its

> ignorant of me, but in the early years you are too overwhelmed with the

> parts of

> CHARGE you know your child has.

>

> So my question is...to those with bipap or tracheostomy...can you give me

> the pros and cons

> before we go to this meeting so I feel prepared and know what to ask.

>

> many thanks Les x

>

>

[Guest guest]

Les,

had a trach for 8 years. It made a big difference for her. She was

still in the NICU when she received it. THey told us it was our choice, but

without it, they did not think she would be able to breath very well on her

own. She had bilateral coanal atresia, her tongue fell back, and sleep apena.

It took along time to get it out. At times i wished we had never done it,

however, i truly believe w/out it she would not have survived. The first

several years were quite tubulent. Lots of surgeries, she had lots of " blue

spells " where she could not breath b/c of the reactive airways. At first she

as

on the BIPAP and O2 w/the trach, we eventually got her off of both. With

many surgeries (37 to date) she would have had a hard time being intubated for

each one, her airways were very small.

Finally it came out, than the sleep apena became more aparent, so we were

back on BIAP for another year. I was very frustrated. TOday, she is trach

free, and BIPAP free and O2 free. I truly believe w/out the trach and the

BIPAP,

she would not be with us today.

It is tough, it makes life more complicated, but we have her with us and

that means everything. You have to make adjustments, and try to get some

nursing help to help you learn and to give you breaks.

We would take Eirka swimming with a trach, jet skiing, snow skiing! Never

thought you could do that, but we did!

Remember, the first few years are rough, but it does get easier. We are all

here for you.

CAthie, mom to 11 yr CHARGER

************************************** See what's free at http://www.aol.com.

[Guest guest]

My apologies, Les. Of course it wasn't all peaches and cream with a trach.

But one of the good things I want to convey is that you and she can come

through it,

and with dear and heartfilled memories; so much so in fact, that you'd have

to work abit

to dredge back up the trickier times.

It's just like everything else. You do your best, and in the end, it's all

in His hands.

Love,

in Ma.

************************************** See what's free at http://www.aol.com.

[Guest guest]

Les,

Try the bipap. Evan is on CPAP at night (started at 1 year, after a unplanned

stay in the PICU last summer). I would have never thought he would tollerate it

or keep it on--and when he is awake, he won't. We put it on after he falls

asleep. And he does very well at keeping it on. It is a lot less invasive than

a trach.

(mom to Evan, 22 months)

Weir kawfolks@...> wrote:

> Les,

Although we did not experience this personally, I am more inclined to go

with what others have said, it's worth a try for the bipap first in my

opinion before heading down the trach route. They didn't want to do a

g-tube with Kennedy, just straight to a j-tube and I fought them hard (and

obvioulsy won) and in the end it was a good decision. I felt that I was

willing to take the risk of the g tube/fundo not working out first then if

we HAD to do the J-tube we would. I know it's a different part of the

anatomy; just remember though, that the decision is yours.

Kennedy's Mom

www.chargesyndrome.info

>

>

>

> I really am not sure of what the issues are, I believe from what I can see

> when she has these major

> desats lowest being 36 that her tongue is at the very back of her mouth,

> there are noises in her throat,

> as if she is trying to breath, and her diagphram region is moving up and

> down, so I think her tongue is occluding.

>

> I do not have this confirmed by her team. Amélie is in 2 litres oxygen

> 24/7

> for her chronic lung disease which she has had

> since her two pulmonary arrests in Dec 05, we dont seem to be able to ween

> her from the O2.

>

> Amélie has had pulmonary hypertension, has cardiomyopathy and an

> outstanding

> ASD (PDA ligated)

> if this makes anything clearer to you.

>

> Also the bulbar dysphagia, facial palsy slight, and 2 failed

> videofluroscopy.

>

> I would say her lungs since the RSV positive bronchiolitis have been her

> worst issue.

>

> appreciate your advice let me know what you think if anything hugs Les x

>

> On 30/05/07, Keedy wkeedy@... >

> wrote:

> >

> > Dear Les,

> >

> > I see you are considering important issues.

> >

> > One question I have is, what is causing the breathing difficulty? Is it

> > primarily lung complications? Or is the cause unknown at this time?

> >

> > Kendra also did not see much improvement from tonsillectomy and partial

> > adenoidectomy.

> >

> > She continued to thrilve with a nasal canula of oxygen at night. Finally

> > as she has gotten bigger, her night-time breathing has improved.

> >

> > She had a tracheotomy for her first three years. Once her double aortic

> > arch was identified and repaired, she was able to be decannulated from

> the

> > trach.

> >

> > Her double aortic arch was difficult for some ENT and Cardiology

> > specialists to see. Once it was identified, there was a dramatic

> > understanding of her difficulties and a way to address them.

> >

> > while this kind of difficulty may not be Ame'lie's difficulty, I am

> > curious what exactly the nature of the problem is.

> >

> >

> > Mom to Kendra, and Camille

> > Amélie Bipap or Trach ...help PLEASE

> >

> > Hi All

> >

> > We are going to a meeting on the 6th June.

> >

> > Amélies post op recovery has gone fantastically well, but has not made

> the

> > slightest

> > difference to her desats and airway issues.

> >

> > I know this meeting is to address where we go from here?

> >

> > I have never really read the trach posts as we dont have one, and I know

> > its

> > ignorant of me, but in the early years you are too overwhelmed with the

> > parts of

> > CHARGE you know your child has.

> >

> > So my question is...to those with bipap or tracheostomy...can you give

> me

> > the pros and cons

> > before we go to this meeting so I feel prepared and know what to ask.

> >

> > many thanks Les x

> >

> >

[Guest guest]

don't we all? although maybe I don't want to see what's ahead of me.

maria

Amélie Bipap or Trach ...help PLEASE

>

> Hi All

>

> We are going to a meeting on the 6th June.

>

> Amélies post op recovery has gone fantastically well, but has not made the

> slightest

> difference to her desats and airway issues.

>

> I know this meeting is to address where we go from here?

>

> I have never really read the trach posts as we dont have one, and I know

> its

> ignorant of me, but in the early years you are too overwhelmed with the

> parts of

> CHARGE you know your child has.

>

> So my question is...to those with bipap or tracheostomy...can you give me

> the pros and cons

> before we go to this meeting so I feel prepared and know what to ask.

>

> many thanks Les x

>

>

[Guest guest]

We have not dealt with it but I hope everything works out and you

all get some answers soon!!

Hugs,

Crystal and Eva

>

> Hi All

>

> We are going to a meeting on the 6th June.

>

> Amélies post op recovery has gone fantastically well, but has not

made the

> slightest

> difference to her desats and airway issues.

>

> I know this meeting is to address where we go from here?

>

> I have never really read the trach posts as we dont have one, and

I know its

> ignorant of me, but in the early years you are too overwhelmed

with the

> parts of

> CHARGE you know your child has.

>

> So my question is...to those with bipap or tracheostomy...can you

give me

> the pros and cons

> before we go to this meeting so I feel prepared and know what to

ask.

>

> many thanks Les x

>

>

>

[Guest guest]

Oh Lesley-

had a trach for twelve years because his swallow was so poor. He was

given the trach at six weeks of age just at the point I had lost any sense of

resilience or humour, and though it verily saved his life - I did not grasp my

complete and willing gratitude about it for several years. Truly, it can be

completely hum-drum routine and old hat - and it still worth avoiding if not

absolutely needed. In our case it was completely necessary, if not for the

danger of repeated aspiration, then for the narrowing of the airway at the

repair site of the Tracheo-Esophageal Fistulas removal which caused positional

airway occlusion (yes, blue baby).

Will keep you and your warm in my heart as always-

Take good care-

Yuka

Amélie Bipap or Trach ...help PLEASE

Hi All

We are going to a meeting on the 6th June.

Amélies post op recovery has gone fantastically well, but has not made the

slightest

difference to her desats and airway issues.

I know this meeting is to address where we go from here?

I have never really read the trach posts as we dont have one, and I know its

ignorant of me, but in the early years you are too overwhelmed with the

parts of

CHARGE you know your child has.

So my question is...to those with bipap or tracheostomy...can you give me

the pros and cons

before we go to this meeting so I feel prepared and know what to ask.

many thanks Les x

[Guest guest]

I love that saying 'all in his hands' it most definitely is!

your all right and very supportive...you all make me feel calm...knowing you

have all done this and life has gone well!

As well as can be expected of course.

Will keep you updated after Wednesday Les x

>

> My apologies, Les. Of course it wasn't all peaches and cream with a

> trach.

> But one of the good things I want to convey is that you and she can come

> through it,

> and with dear and heartfilled memories; so much so in fact, that you'd

> have

> to work abit

> to dredge back up the trickier times.

> It's just like everything else. You do your best, and in the end, it's all

>

> in His hands.

> Love,

> in Ma.

>

> ************************************** See what's free at

> http://www.aol.com.

>

>

[Guest guest]

Cathie

I think your story is reassuring in that clearly needed to grow older,

to out grow all these invasive parts...and with all those surgeries you must

be

so proud of her.

I dont feel as panicked now and will see what is advised Wednesday.

thanks Les x

>

> Les,

> had a trach for 8 years. It made a big difference for her. She was

> still in the NICU when she received it. THey told us it was our choice,

> but

> without it, they did not think she would be able to breath very well on

> her

> own. She had bilateral coanal atresia, her tongue fell back, and sleep

> apena.

> It took along time to get it out. At times i wished we had never done it,

> however, i truly believe w/out it she would not have survived. The first

> several years were quite tubulent. Lots of surgeries, she had lots of

> " blue

> spells " where she could not breath b/c of the reactive airways. At first

> she as

> on the BIPAP and O2 w/the trach, we eventually got her off of both. With

> many surgeries (37 to date) she would have had a hard time being intubated

> for

> each one, her airways were very small.

> Finally it came out, than the sleep apena became more aparent, so we were

> back on BIAP for another year. I was very frustrated. TOday, she is trach

> free, and BIPAP free and O2 free. I truly believe w/out the trach and the

> BIPAP,

> she would not be with us today.

>

> It is tough, it makes life more complicated, but we have her with us and

> that means everything. You have to make adjustments, and try to get some

> nursing help to help you learn and to give you breaks.

>

> We would take Eirka swimming with a trach, jet skiing, snow skiing! Never

> thought you could do that, but we did!

> Remember, the first few years are rough, but it does get easier. We are

> all

> here for you.

> CAthie, mom to 11 yr CHARGER

>

> ************************************** See what's free at

> http://www.aol.com.

>

>

[Guest guest]

Les,

Can't offer any advise as this isn't something we've experienced with

but

just wanted to send you best wishes and good luck with Wednesday.

Love is xx

>

> I love that saying 'all in his hands' it most definitely is!

> your all right and very supportive...you all make me feel calm...knowing

> you

> have all done this and life has gone well!

> As well as can be expected of course.

>

> Will keep you updated after Wednesday Les x

>

> On 31/05/07, mdlinda@...

mdlinda@...>

> wrote:

> >

> > My apologies, Les. Of course it wasn't all peaches and cream with a

> > trach.

> > But one of the good things I want to convey is that you and she can come

> > through it,

> > and with dear and heartfilled memories; so much so in fact, that you'd

> > have

> > to work abit

> > to dredge back up the trickier times.

> > It's just like everything else. You do your best, and in the end, it's

> all

> >

> > in His hands.

> > Love,

> > in Ma.

> >

> > ************************************** See what's free at

> > http://www.aol.com.

> >

> >

[Guest guest]

Hi Les,

I just wanted to throw my 2 cents in. Felix is 14 months and has been

trached for 10 months. Prior to that we were in the NICU and at home

for one month without a trach. He would have these episodes when he

was doing a BM or refluxing (or both) where he would throw his head

back and pant and turn mottled and sweaty and desat into the sixties.

It was very scary and when I look back on it I wonder how they could

have sent us home like that. The doctors still don't really know what

was causing his breathing issues - probably a host of things. He

can't swallow so his secretions are pooling at the back of his

throat, he has tracheamalacia, as well as huge adenoids and tonsils

(not yet removed although he had a suppraglottalplasty which really

didn't help), two holes in his heart plus a leaky valve to be

repaired this summer, and a TEF-EA repair.

In the NICU there was discussion about a trach but they basically

left it up to us - no doctor would tell us unequivocally that they

thought a trach would be the answer to his problems. As an

outpatient, we had a new ORL and he took one look at Felix and told

us he was unsafe. Beyond the safety issues, this doctor emphasized

the developmental importance for Felix of having a safe airway.

Ultimately that was what got to me and 5 days later he was trached,

and in our case it was the best thing we ever did. Someone else

mentioned it in their post, but for us, Felix was like a new baby

post-trach. He was suddenly ultra-alert, moving around a lot more and

just more " there " than he had been before. I always say that I never

realized how much he was struggling to breathe until I saw him not

struggle. In the CHARGE world I think you tend to normalize a lot and

we were definitely not seeing his struggle and it took the new ORL to

really shake us awake about this.

Our experience with the trach has been like everyone else's, you are

petrified at first and can't imagine changing the trach, but it

quickly becomes routine. You eventually get him out of the house and

then in the tub and doing all the normal things. It should be noted

that here in Massachusetts, with the trach came a lot of home nursing

which is a huge help - especially at night. I also don't want to

minimize the impact of having the trach, it will complicate your

life. But for Felix it has taken away his spells and made him easier

to care for and a lot more comfortable.

Good luck with the decision and let us know how the meeting goes.

Best,

, mom to Felix 14 month CHARGER and Max 3 years

>

> Hi All

>

> We are going to a meeting on the 6th June.

>

> Amélies post op recovery has gone fantastically well, but has not

made the

> slightest

> difference to her desats and airway issues.

>

> I know this meeting is to address where we go from here?

>

> I have never really read the trach posts as we dont have one, and I

know its

> ignorant of me, but in the early years you are too overwhelmed with

the

> parts of

> CHARGE you know your child has.

>

> So my question is...to those with bipap or tracheostomy...can you

give me

> the pros and cons

> before we go to this meeting so I feel prepared and know what to

ask.

>

> many thanks Les x

>

>

>

[Guest guest]

The ENT has never told me what Amélie issues are called, he will just say

the area is floppy, I read the tracheomalacia in the

charge manual last night as it came up frequently, I think your first

paragraph on Felix describes Amélie's life, she pools sounds dreadful

at times crackling away and is constant suction, at times she looks sweaty

mottly and turns blue when she coughs and is struggling

to clear her secretions. Nightime is worst as she is monitored for sleep and

thats when we see the major desats.

I now wonder if she is like that at night she must have sats issues during

the day, except we dont monitor her daytime.

I wonder would it make her day easier with a trach...it is just a big step

and one we are frightened of. If it seems to be

the majority vote Wednesday then we will obviously go with it. Although when

we had a big meeting over her stomach,

no one could agree and this left us with a nightmare decision which we had

to make...all beit the right one now, at the time

your are in a dreadful place with your conscience.

I also think the bradys after surgery may have been due to a vagal response

as we did this at Uni yesterday, when doing neonatal

resuscitation, and as its in the area it could have been over stimulated.

Well not long until Wednesday, I just hopw we have some answers and a

respite care plan determined for the long term.

many thanks Les x

>

> Hi Les,

>

> I just wanted to throw my 2 cents in. Felix is 14 months and has been

> trached for 10 months. Prior to that we were in the NICU and at home

> for one month without a trach. He would have these episodes when he

> was doing a BM or refluxing (or both) where he would throw his head

> back and pant and turn mottled and sweaty and desat into the sixties.

> It was very scary and when I look back on it I wonder how they could

> have sent us home like that. The doctors still don't really know what

> was causing his breathing issues - probably a host of things. He

> can't swallow so his secretions are pooling at the back of his

> throat, he has tracheamalacia, as well as huge adenoids and tonsils

> (not yet removed although he had a suppraglottalplasty which really

> didn't help), two holes in his heart plus a leaky valve to be

> repaired this summer, and a TEF-EA repair.

>

> In the NICU there was discussion about a trach but they basically

> left it up to us - no doctor would tell us unequivocally that they

> thought a trach would be the answer to his problems. As an

> outpatient, we had a new ORL and he took one look at Felix and told

> us he was unsafe. Beyond the safety issues, this doctor emphasized

> the developmental importance for Felix of having a safe airway.

>

> Ultimately that was what got to me and 5 days later he was trached,

> and in our case it was the best thing we ever did. Someone else

> mentioned it in their post, but for us, Felix was like a new baby

> post-trach. He was suddenly ultra-alert, moving around a lot more and

> just more " there " than he had been before. I always say that I never

> realized how much he was struggling to breathe until I saw him not

> struggle. In the CHARGE world I think you tend to normalize a lot and

> we were definitely not seeing his struggle and it took the new ORL to

> really shake us awake about this.

>

> Our experience with the trach has been like everyone else's, you are

> petrified at first and can't imagine changing the trach, but it

> quickly becomes routine. You eventually get him out of the house and

> then in the tub and doing all the normal things. It should be noted

> that here in Massachusetts, with the trach came a lot of home nursing

> which is a huge help - especially at night. I also don't want to

> minimize the impact of having the trach, it will complicate your

> life. But for Felix it has taken away his spells and made him easier

> to care for and a lot more comfortable.

>

> Good luck with the decision and let us know how the meeting goes.

>

> Best,

> , mom to Felix 14 month CHARGER and Max 3 years

>

>

> >

> > Hi All

> >

> > We are going to a meeting on the 6th June.

> >

> > Amélies post op recovery has gone fantastically well, but has not

> made the

> > slightest

> > difference to her desats and airway issues.

> >

> > I know this meeting is to address where we go from here?

> >

> > I have never really read the trach posts as we dont have one, and I

> know its

> > ignorant of me, but in the early years you are too overwhelmed with

> the

> > parts of

> > CHARGE you know your child has.

> >

> > So my question is...to those with bipap or tracheostomy...can you

> give me

> > the pros and cons

> > before we go to this meeting so I feel prepared and know what to

> ask.

> >

> > many thanks Les x

> >

> >

> >

[Guest guest]

Hi,

We were faced with the decision whether or not to trach our daughter , Abby,

12 years ago.

At 10 months of age, Abby had been hospitalized for pneumonia and

pseudomonas once again and we were told that our last option was to try the

BiPap and

if that didn't work then she would have to be trached. At that time Abby was

the youngest patient at s Hopkins Children's Center to use a BiPap and

they were not sure it would work for her. Now they use the BiPap for even

younger babies.

When she was born, Abby had a TEF, floppy airway, bilateral choanal atresia,

had to be suctioned constantly, could not swallow, etc. When she was a

baby, Abby would also have a blue cast at times when she would get mucous

plugs,

her stats would drop, etc.. I had to do nebulizer treatments several times

a day, chest and back pt, a lot of deep suctioning which I hated to do but it

eased Abby's breathing.

The day we started using the BiPap was the day life for Abby and all of us

become so much better. She could finally sleep soundly at night (no

suctioning, no coughing or gagging, etc.) and this made such a difference for

her

health and her cognitive growth.

The Bi Pap has been a miracle for Abby. She has worn the BiPap every night

since she was 10 months old. She has never been hospitalized again for

pneumonia even though she cannot swallow and still has copious secretions. She

has learned to manage them better. When she is sick with a cold, she is the

first one that wants her mask on and then takes a nap. Abby is a really

healthy kid now and I attribute that to using the machine every night. I can't

remember the last time she had an antibiotic and she is able to fight off colds

on her own without it going into other type respiratory illnesses.

The BiPap itself has changed so much since Abby was little. It is such a

compact little box (as small as a child's shoe box) that weighs practically

nothing compared to the heavier larger machine we use to have next to her bed.

Even the head gear is so different than before. Abby now uses the mask and a

little head strap rather than the bonnet. There is also a computer program

that is installed in the new BiPaps which can monitor different things. You

can take the computer card to Pulmonary visits and they can read the

computer card to extract a lot of respiratory information. I am hoping that

with

her new machine Abby's Pulmonary Doctor will be able to receive enough

information that we will no longer have to do periodic (every few years)

overnight

Sleep Studies. Her BiPap goes with us whenever we travel to include camping.

I know everyone has to make their own decisions about what is best for their

own child. For us the BiPAP was a miracle for Abby. She is growing leaps

and bounds and is now up to 80 pounds and is starting to enter puberty.

I wish you all the best in making this type decision. I know it is a

difficult one.

Appell

Mom to (soon to be 19 yrs old), Abby (13 yrs old) and wife to Bruce

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi Les,

Not a territory I am familiar with so no words of wisdom here, but lots of

hugs and support for the best decision. I am with everyone on the least

restrictive option first and progress to more if required. I recall having

to decide on this with re G-tube or not at 3 months old. All this

research means you will do what is best for Amelie in the long run. If we

all look back at the lives of our children, there is so much that we all

told ourselves we would never be able to cope with but we have managed just

fine, albeit with trepidation.

Hope the meeting on Wednesday goes well and you get enough answers to enable

you to move forward to the best option for Amelie.

Flo (UK)

Mum to - CHARGE - (7) and Elly (4)

[Guest guest]

Les,

I can definitely tell you that if she is struggling to breathe now,

the trach will take that away. You will still need to suction the

trach, but it clears much easier than from the mouth. Felix doesn't

desat in the day anymore and in fact we were recently cleared to take

him off of the sat monitor during the day.

Again, best of luck with the decision. Don't be afraid if they

recommend a trach. You may find as we did it was the best thing!

Take care,

> > >

> > > Hi All

> > >

> > > We are going to a meeting on the 6th June.

> > >

> > > Amélies post op recovery has gone fantastically well, but has

not

> > made the

> > > slightest

> > > difference to her desats and airway issues.

> > >

> > > I know this meeting is to address where we go from here?

> > >

> > > I have never really read the trach posts as we dont have one,

and I

> > know its

> > > ignorant of me, but in the early years you are too overwhelmed

with

> > the

> > > parts of

> > > CHARGE you know your child has.

> > >

> > > So my question is...to those with bipap or tracheostomy...can

you

> > give me

> > > the pros and cons

> > > before we go to this meeting so I feel prepared and know what to

> > ask.

> > >

> > > many thanks Les x

> > >

> > >

> > >