Capping the Trach/Decannulation

May 13, 2006

Hi everyone, I have been out of the loop for a while. Lots going on

with returning to work, etc. However, Carmen just had her final

choanal atresia repair along with a tonsillectomy. To our surprise,

her ENT feels it's time for decannulation! We weren't expecting this

to happen for a while and are thrilled! The capping protocol was

reviewed with us and we will begin that on Monday. So, I'm hoping

some of you who have gone through this process can let me know of any

pitfalls I should be aware of before we start. Thanks in advance for

any help you can provide.

, mom to Zachary 4.9 years and Carmen 23 months (CHARGE)

May 13, 2006

No help as we didn't have a trach, but how exciting!!!!!!

>

> Hi everyone, I have been out of the loop for a while. Lots going on

> with returning to work, etc. However, Carmen just had her final

> choanal atresia repair along with a tonsillectomy. To our surprise,

> her ENT feels it's time for decannulation! We weren't expecting this

> to happen for a while and are thrilled! The capping protocol was

> reviewed with us and we will begin that on Monday. So, I'm hoping

> some of you who have gone through this process can let me know of any

> pitfalls I should be aware of before we start. Thanks in advance for

> any help you can provide.

>

> , mom to Zachary 4.9 years and Carmen 23 months (CHARGE)

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

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

> the CHARGE Syndrome Foundation; 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

>

> 8th International

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

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

>

May 13, 2006

Congratulations!!!!

We didn't really have any pitfalls either. Makenna was a trooper.

The first few times we tried the Passy Muir she blew it across the

room coughing and once into my chest! Ouch, I had a pretty nasty

bruise. But then we just didn't increase her trach size as she needed

it so she had a lot of air go around the trach so when we capped her

she was used to it. The doc said to start slow, maybe five minutes,

however, she sat in the office for 30 minutes the first time with no

trouble. She progressed quickly. We saw a lot of nasal discharge

also. She was completely tube fed at the time so no regurgitation.

We have been trach free for 2 1/2 years We don't miss that trach a

bit. It was a little weird letting her sleep in a room by herself for

the first time. We also had the stoma close by itself. Bathing isn't

fun but it goes fairly quickly. She needed hers surgically closed

also but you can barely see the scar!

Good Luck

, mom to Makenna 5

>

> Hi everyone, I have been out of the loop for a while. Lots going

on

> with returning to work, etc. However, Carmen just had her final

> choanal atresia repair along with a tonsillectomy. To our surprise,

> her ENT feels it's time for decannulation! We weren't expecting

this

> to happen for a while and are thrilled! The capping protocol was

> reviewed with us and we will begin that on Monday. So, I'm hoping

> some of you who have gone through this process can let me know of

any

> pitfalls I should be aware of before we start. Thanks in advance

for

> any help you can provide.

>

> , mom to Zachary 4.9 years and Carmen 23 months (CHARGE)

>

May 14, 2006

-

No experience with this -- but I'm sharing in your joy and hoping for a

smooth and uneventful decannulation process! How exciting for your family

and for lil' Carmen!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

May 14, 2006

Thanks Yuka--We are excited, but also a bit anxious! I'm told that

the doctor will put Carmen under and do a final bronch, and then

take her trach tube out. I believe a patch will be put over it but

I'm not sure it will be surgically closed. I'll keep you posted on

how all this goes!!

>

> Dear -

>

> How exciting! First I have to say that decannulation is

wonderful. I love

> daily that no longer has a trach. Having said that, it is

amazing how

> quickly one adjusts to it being gone (almost as though it and the

ubiquitous

> sounds of the suction pump were never there).

>

> Pitfalls:

>

> When we first capped the trach there was suddenly frothing coming

out of

> 's nose. Apparently his system re-adjusting to the back

pressure of

> the completely closed trach. Also, when swallowing liquids there

was

> projectile nasal regurgitation or reflux. Yuck.

>

> When we first decannulated it was standard procedure to leave the

stoma (now

> a persistent fistula) open to see if it would close on it's own.

So we went

> from capped to a bare open stoma which cause so much irritation,

as 's

> system was no longer used to having air come directly into his

trachea

> through the stoma.

>

> It was three months until the open stoma was surgically closed.

In this

> procedure the surgeon carefully carved out a section of skin like

a narrow

> wedge of orange (am I describing that well?). Then the stitch

line was

> about three inches across, with inside and outside stitches, the

inside ones

> being self dissolving, the outside ones needing removal.

>

> We did not have any " medical " pitfalls )

>

> Good luck!

>

> Smiles~!

> Yuka

>

> Capping the Trach/Decannulation

>

> Hi everyone, I have been out of the loop for a while. Lots going

on

> with returning to work, etc. However, Carmen just had her final

> choanal atresia repair along with a tonsillectomy. To our

surprise,

> her ENT feels it's time for decannulation! We weren't expecting

this

> to happen for a while and are thrilled! The capping protocol was

> reviewed with us and we will begin that on Monday. So, I'm hoping

> some of you who have gone through this process can let me know of

any

> pitfalls I should be aware of before we start. Thanks in advance

for

> any help you can provide.

>

> , mom to Zachary 4.9 years and Carmen 23 months (CHARGE)

>

May 14, 2006

yay good luck iwht it

>

> we capped for about a year before erika was ready. We tried 2x before,

> but

> the ENT was quick to put it back in when she had some difficulty. We

> switched ENT's and he was more agggresive. Also, we hap done the

> choanal atresia,

> yet agian! had trouble the first 5 horus, labored breathing, but

> w/O2

> and me and my husband sat with her in her bed (was in the PICU) and she

> finally relaxed. we went home 2 days later, w/ alittle O2, and 5 days

> later no

> O2. They surgically closed it 4 months later. She was 8 yrs old and had

> been

> trached her whole life. So i expected a big ugly scar, but you can

> barely

> tell. We requested a plastic surgeon, but he felt the ENT would be fine,

> and

> he was!

>

> Good luck, this was one of our biggest celebrations! we got it out

> 2 weeks

> before her 8th b'day so we had a big party, 100 people!

>

> Cathie, mom to erika

>

May 14, 2006

yay good luck iwht it

>

> we capped for about a year before erika was ready. We tried 2x before,

> but

> the ENT was quick to put it back in when she had some difficulty. We

> switched ENT's and he was more agggresive. Also, we hap done the

> choanal atresia,

> yet agian! had trouble the first 5 horus, labored breathing, but

> w/O2

> and me and my husband sat with her in her bed (was in the PICU) and she

> finally relaxed. we went home 2 days later, w/ alittle O2, and 5 days

> later no

> O2. They surgically closed it 4 months later. She was 8 yrs old and had

> been

> trached her whole life. So i expected a big ugly scar, but you can

> barely

> tell. We requested a plastic surgeon, but he felt the ENT would be fine,

> and

> he was!

>

> Good luck, this was one of our biggest celebrations! we got it out

> 2 weeks

> before her 8th b'day so we had a big party, 100 people!

>

> Cathie, mom to erika

>

May 14, 2006

Hi, my name is Danette and I have a 7 yo son who has been trached since he was 2

months old. This is the first time I written to the CHARGE group. We have been

through 4 ENT's. He is capped day and night. It has been thought that he could

be decannulated for the past 3 years but each time they do a bronch they are

unable to pass through and say he needs to grow before they will remove the

trach. Has this been similar for others? I think he is ready to lose it but

the docs don't.

Thanks

Danette Roth

Re: Capping the Trach/Decannulation

Thanks Yuka--We are excited, but also a bit anxious! I'm told that

the doctor will put Carmen under and do a final bronch, and then

take her trach tube out. I believe a patch will be put over it but

I'm not sure it will be surgically closed. I'll keep you posted on

how all this goes!!

>

> Dear -

>

> How exciting! First I have to say that decannulation is

wonderful. I love

> daily that no longer has a trach. Having said that, it is

amazing how

> quickly one adjusts to it being gone (almost as though it and the

ubiquitous

> sounds of the suction pump were never there).

>

> Pitfalls:

>

> When we first capped the trach there was suddenly frothing coming

out of

> 's nose. Apparently his system re-adjusting to the back

pressure of

> the completely closed trach. Also, when swallowing liquids there

was

> projectile nasal regurgitation or reflux. Yuck.

>

> When we first decannulated it was standard procedure to leave the

stoma (now

> a persistent fistula) open to see if it would close on it's own.

So we went

> from capped to a bare open stoma which cause so much irritation,

as 's

> system was no longer used to having air come directly into his

trachea

> through the stoma.

>

> It was three months until the open stoma was surgically closed.

In this

> procedure the surgeon carefully carved out a section of skin like

a narrow

> wedge of orange (am I describing that well?). Then the stitch

line was

> about three inches across, with inside and outside stitches, the

inside ones

> being self dissolving, the outside ones needing removal.

>

> We did not have any " medical " pitfalls )

>

> Good luck!

>

> Smiles~!

> Yuka

>

> Capping the Trach/Decannulation

>

> Hi everyone, I have been out of the loop for a while. Lots going

on

> with returning to work, etc. However, Carmen just had her final

> choanal atresia repair along with a tonsillectomy. To our

surprise,

> her ENT feels it's time for decannulation! We weren't expecting

this

> to happen for a while and are thrilled! The capping protocol was

> reviewed with us and we will begin that on Monday. So, I'm hoping

> some of you who have gone through this process can let me know of

any

> pitfalls I should be aware of before we start. Thanks in advance

for

> any help you can provide.

>

> , mom to Zachary 4.9 years and Carmen 23 months (CHARGE)

>

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

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

CHARGE Syndrome Foundation; 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

8th International

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

www.chargesyndrome.org or by calling 1-.

May 14, 2006

wellcome dennete tell us mroe wat other aspects of charge does he have id

love to learn more there might be a reason he cant do it in thw orld of

charge wed only understand if we know more thats how it is in here im a

charger ive never been trached but i do have narrow airways and have needed

cpap soemtiems tonisls can be a factor hope this helps hugs ellen charger

>

> Hi, my name is Danette and I have a 7 yo son who has been trached since he

> was 2 months old. This is the first time I written to the CHARGE group. We

> have been through 4 ENT's. He is capped day and night. It has been thought

> that he could be decannulated for the past 3 years but each time they do a

> bronch they are unable to pass through and say he needs to grow before they

> will remove the trach. Has this been similar for others? I think he is

> ready to lose it but the docs don't.

> Thanks

> Danette Roth

>

> Re: Capping the Trach/Decannulation

>

> Thanks Yuka--We are excited, but also a bit anxious! I'm told that

> the doctor will put Carmen under and do a final bronch, and then

> take her trach tube out. I believe a patch will be put over it but

> I'm not sure it will be surgically closed. I'll keep you posted on

> how all this goes!!

>

> >

> > Dear -

> >

> > How exciting! First I have to say that decannulation is

> wonderful. I love

> > daily that no longer has a trach. Having said that, it is

> amazing how

> > quickly one adjusts to it being gone (almost as though it and the

> ubiquitous

> > sounds of the suction pump were never there).

> >

> > Pitfalls:

> >

> > When we first capped the trach there was suddenly frothing coming

> out of

> > 's nose. Apparently his system re-adjusting to the back

> pressure of

> > the completely closed trach. Also, when swallowing liquids there

> was

> > projectile nasal regurgitation or reflux. Yuck.

> >

> > When we first decannulated it was standard procedure to leave the

> stoma (now

> > a persistent fistula) open to see if it would close on it's own.

> So we went

> > from capped to a bare open stoma which cause so much irritation,

> as 's

> > system was no longer used to having air come directly into his

> trachea

> > through the stoma.

> >

> > It was three months until the open stoma was surgically closed.

> In this

> > procedure the surgeon carefully carved out a section of skin like

> a narrow

> > wedge of orange (am I describing that well?). Then the stitch

> line was

> > about three inches across, with inside and outside stitches, the

> inside ones

> > being self dissolving, the outside ones needing removal.

> >

> > We did not have any " medical " pitfalls )

> >

> > Good luck!

> >

> > Smiles~!

> > Yuka

> >

> > Capping the Trach/Decannulation

> >

> > Hi everyone, I have been out of the loop for a while. Lots going

> on

> > with returning to work, etc. However, Carmen just had her final

> > choanal atresia repair along with a tonsillectomy. To our

> surprise,

> > her ENT feels it's time for decannulation! We weren't expecting

> this

> > to happen for a while and are thrilled! The capping protocol was

> > reviewed with us and we will begin that on Monday. So, I'm hoping

> > some of you who have gone through this process can let me know of

> any

> > pitfalls I should be aware of before we start. Thanks in advance

> for

> > any help you can provide.

> >

> > , mom to Zachary 4.9 years and Carmen 23 months (CHARGE)

> >

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

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

> the

> CHARGE Syndrome Foundation; 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

>

> 8th International

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

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

>

May 14, 2006

wellcome dennete tell us mroe wat other aspects of charge does he have id

love to learn more there might be a reason he cant do it in thw orld of

charge wed only understand if we know more thats how it is in here im a

charger ive never been trached but i do have narrow airways and have needed

cpap soemtiems tonisls can be a factor hope this helps hugs ellen charger

>

> Hi, my name is Danette and I have a 7 yo son who has been trached since he

> was 2 months old. This is the first time I written to the CHARGE group. We

> have been through 4 ENT's. He is capped day and night. It has been thought

> that he could be decannulated for the past 3 years but each time they do a

> bronch they are unable to pass through and say he needs to grow before they

> will remove the trach. Has this been similar for others? I think he is

> ready to lose it but the docs don't.

> Thanks

> Danette Roth

>

> Re: Capping the Trach/Decannulation

>

> Thanks Yuka--We are excited, but also a bit anxious! I'm told that

> the doctor will put Carmen under and do a final bronch, and then

> take her trach tube out. I believe a patch will be put over it but

> I'm not sure it will be surgically closed. I'll keep you posted on

> how all this goes!!

>

> >

> > Dear -

> >

> > How exciting! First I have to say that decannulation is

> wonderful. I love

> > daily that no longer has a trach. Having said that, it is

> amazing how

> > quickly one adjusts to it being gone (almost as though it and the

> ubiquitous

> > sounds of the suction pump were never there).

> >

> > Pitfalls:

> >

> > When we first capped the trach there was suddenly frothing coming

> out of

> > 's nose. Apparently his system re-adjusting to the back

> pressure of

> > the completely closed trach. Also, when swallowing liquids there

> was

> > projectile nasal regurgitation or reflux. Yuck.

> >

> > When we first decannulated it was standard procedure to leave the

> stoma (now

> > a persistent fistula) open to see if it would close on it's own.

> So we went

> > from capped to a bare open stoma which cause so much irritation,

> as 's

> > system was no longer used to having air come directly into his

> trachea

> > through the stoma.

> >

> > It was three months until the open stoma was surgically closed.

> In this

> > procedure the surgeon carefully carved out a section of skin like

> a narrow

> > wedge of orange (am I describing that well?). Then the stitch

> line was

> > about three inches across, with inside and outside stitches, the

> inside ones

> > being self dissolving, the outside ones needing removal.

> >

> > We did not have any " medical " pitfalls )

> >

> > Good luck!

> >

> > Smiles~!

> > Yuka

> >

> > Capping the Trach/Decannulation

> >

> > Hi everyone, I have been out of the loop for a while. Lots going

> on

> > with returning to work, etc. However, Carmen just had her final

> > choanal atresia repair along with a tonsillectomy. To our

> surprise,

> > her ENT feels it's time for decannulation! We weren't expecting

> this

> > to happen for a while and are thrilled! The capping protocol was

> > reviewed with us and we will begin that on Monday. So, I'm hoping

> > some of you who have gone through this process can let me know of

> any

> > pitfalls I should be aware of before we start. Thanks in advance

> for

> > any help you can provide.

> >

> > , mom to Zachary 4.9 years and Carmen 23 months (CHARGE)

> >

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

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

> the

> CHARGE Syndrome Foundation; 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

>

> 8th International

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

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

>

May 14, 2006

He had his tonsils removed a couple of years ago. When he came home as a

newborn he was on oxygen. When he was 6 weeks old he got an infection that

caused swelling and he would stop breathing. They had to intebate him and they

were never able to ween him off the ventelator. They said the only way to get

him home was to trach him so we did. The docs even agree that he is able to

breath on his own now but because they can not scope him they are afraid if

there was an emergency of any type, like a car accident, the paramedics would

not be able to intebate him. I understand that. Is scoping the only way for

these kids to lose a trach?

Danette

Re: Capping the Trach/Decannulation

>

> Thanks Yuka--We are excited, but also a bit anxious! I'm told that

> the doctor will put Carmen under and do a final bronch, and then

> take her trach tube out. I believe a patch will be put over it but

> I'm not sure it will be surgically closed. I'll keep you posted on

> how all this goes!!

>

> >

> > Dear -

> >

> > How exciting! First I have to say that decannulation is

> wonderful. I love

> > daily that no longer has a trach. Having said that, it is

> amazing how

> > quickly one adjusts to it being gone (almost as though it and the

> ubiquitous

> > sounds of the suction pump were never there).

> >

> > Pitfalls:

> >

> > When we first capped the trach there was suddenly frothing coming

> out of

> > 's nose. Apparently his system re-adjusting to the back

> pressure of

> > the completely closed trach. Also, when swallowing liquids there

> was

> > projectile nasal regurgitation or reflux. Yuck.

> >

> > When we first decannulated it was standard procedure to leave the

> stoma (now

> > a persistent fistula) open to see if it would close on it's own.

> So we went

> > from capped to a bare open stoma which cause so much irritation,

> as 's

> > system was no longer used to having air come directly into his

> trachea

> > through the stoma.

> >

> > It was three months until the open stoma was surgically closed.

> In this

> > procedure the surgeon carefully carved out a section of skin like

> a narrow

> > wedge of orange (am I describing that well?). Then the stitch

> line was

> > about three inches across, with inside and outside stitches, the

> inside ones

> > being self dissolving, the outside ones needing removal.

> >

> > We did not have any " medical " pitfalls )

> >

> > Good luck!

> >

> > Smiles~!

> > Yuka

> >

> > Capping the Trach/Decannulation

> >

> > Hi everyone, I have been out of the loop for a while. Lots going

> on

> > with returning to work, etc. However, Carmen just had her final

> > choanal atresia repair along with a tonsillectomy. To our

> surprise,

> > her ENT feels it's time for decannulation! We weren't expecting

> this

> > to happen for a while and are thrilled! The capping protocol was

> > reviewed with us and we will begin that on Monday. So, I'm hoping

> > some of you who have gone through this process can let me know of

> any

> > pitfalls I should be aware of before we start. Thanks in advance

> for

> > any help you can provide.

> >

> > , mom to Zachary 4.9 years and Carmen 23 months (CHARGE)

> >

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

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

> the

> CHARGE Syndrome Foundation; 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

>

> 8th International

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

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

>

May 14, 2006

i dotn realy know much about th trach aside form what i read in here i think

it is though but if there r other ways sure soemopne will say ull find loads

of help and support on here anyway hugs ellen

>

> He had his tonsils removed a couple of years ago. When he came home as a

> newborn he was on oxygen. When he was 6 weeks old he got an infection that

> caused swelling and he would stop breathing. They had to intebate him and

> they were never able to ween him off the ventelator. They said the only way

> to get him home was to trach him so we did. The docs even agree that he is

> able to breath on his own now but because they can not scope him they are

> afraid if there was an emergency of any type, like a car accident, the

> paramedics would not be able to intebate him. I understand that. Is

> scoping the only way for these kids to lose a trach?

> Danette

>

> Re: Capping the Trach/Decannulation

> >

> > Thanks Yuka--We are excited, but also a bit anxious! I'm told that

> > the doctor will put Carmen under and do a final bronch, and then

> > take her trach tube out. I believe a patch will be put over it but

> > I'm not sure it will be surgically closed. I'll keep you posted on

> > how all this goes!!

> >

> > >

> > > Dear -

> > >

> > > How exciting! First I have to say that decannulation is

> > wonderful. I love

> > > daily that no longer has a trach. Having said that, it is

> > amazing how

> > > quickly one adjusts to it being gone (almost as though it and the

> > ubiquitous

> > > sounds of the suction pump were never there).

> > >

> > > Pitfalls:

> > >

> > > When we first capped the trach there was suddenly frothing coming

> > out of

> > > 's nose. Apparently his system re-adjusting to the back

> > pressure of

> > > the completely closed trach. Also, when swallowing liquids there

> > was

> > > projectile nasal regurgitation or reflux. Yuck.

> > >

> > > When we first decannulated it was standard procedure to leave the

> > stoma (now

> > > a persistent fistula) open to see if it would close on it's own.

> > So we went

> > > from capped to a bare open stoma which cause so much irritation,

> > as 's

> > > system was no longer used to having air come directly into his

> > trachea

> > > through the stoma.

> > >

> > > It was three months until the open stoma was surgically closed.

> > In this

> > > procedure the surgeon carefully carved out a section of skin like

> > a narrow

> > > wedge of orange (am I describing that well?). Then the stitch

> > line was

> > > about three inches across, with inside and outside stitches, the

> > inside ones

> > > being self dissolving, the outside ones needing removal.

> > >

> > > We did not have any " medical " pitfalls )

> > >

> > > Good luck!

> > >

> > > Smiles~!

> > > Yuka

> > >

> > > Capping the Trach/Decannulation

> > >

> > > Hi everyone, I have been out of the loop for a while. Lots going

> > on

> > > with returning to work, etc. However, Carmen just had her final

> > > choanal atresia repair along with a tonsillectomy. To our

> > surprise,

> > > her ENT feels it's time for decannulation! We weren't expecting

> > this

> > > to happen for a while and are thrilled! The capping protocol was

> > > reviewed with us and we will begin that on Monday. So, I'm hoping

> > > some of you who have gone through this process can let me know of

> > any

> > > pitfalls I should be aware of before we start. Thanks in advance

> > for

> > > any help you can provide.

> > >

> > > , mom to Zachary 4.9 years and Carmen 23 months (CHARGE)

> > >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

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

> > the

> > CHARGE Syndrome Foundation; 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

> >

> > 8th International

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

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

> >

May 14, 2006