Re: problems after decannulation

[Guest guest]

Dear Cathie-

Our son was decannulated last January after thirteen years - which I

thought would be really exciting - and it was nice to see his whole neck -

but the persistent stoma/fistula was frustrating. I think that for

the completely open stoma was more aggravating - it made more secretions

because his throat was no longer used to having a gaping hole in his neck -

we had the trach taped shut for three years!~ He hated that his shirts were

getting wet and that his voice was whispery and hoarse. In our case it was

neither allergies nor an inability to handle the secretions. The open stoma

was creating its own reactions in his body - which was now used to a nice

" closed system " . Luckily, our ENT sutured it shut in April - that was a

happy happy thing! To close the stoma, they removed a section of skin the

shape of an orange section - with a long straight suture across his neck

about three inches wide that weaved in and out - closing all the layers -

inner and outer. The trach left quite a hard stoma, so it had to be

removed.

I think because we had the trach taped shut, we did not have to see if the

decannulation itself would be ok - the doctor was just hoping that the stoma

would close on its own. From the outside it did close quite a bit - it

looked like the tip of a blunt pencil lead - but apparently, it was wide

open on the inside when the doctor went to close it.

I hope this helps a little - I am sorry that the persistent stoma is posing

some challenges for your daughter. I was pretty nerve wracked about it - no

one could understand why I wasn't more elated with our decannulation - but

the fact was, it brought us back to a time we had passed many years ago -

and it really frustrated .....

Best of everything-

take good care,

Yuka

problems after decannulation

> hi everyone, looking for advice and/or encouragement! finally got

her

> trach out 5 weeks ago, after having it all her life (8years). she is

doing

> fine breathing and swallowing her secretions quite well. (they were

concerned

> about this). the problem is the coughing out of her stoma. they do not

want

> to surgically close the hole for another several months until they know

she is

> o.k. and wont cough and rip the stitches in her trachea. so when she

coughs we

> cover the hole and help her bring it our of her mouth and/or swallow. we

> tried covering it with tegaderm and gauze but that gets wet from ectroins.

they

> dont encourage us to do that b/c of bacteria forming whent he gauze gets

to

> wet. this seems to happen after about an hour. I am discouraged in that

I

> hope this is not a sign she cant handle the secretions. we are giving her

> alubuterol treatments 2-3 times a day thinking it may be allergy related.

we even

> had her on an oral steroid lsat week or 5 days.

> any thoughts/comments/suggestions would be greatly appreciated.

> cathie, mom to

[Guest guest]

My daughter got her trach out at 8 months old and had to have it surgically

closed over a year later. We had the same problems with moisture and

coughing and we just left it uncovered. With an open hole it is the path of

least resistance - it wasn't a problem for - just an annoyance

(especially bathing and swimming)!

Not sure if that helps......

Lori Myers

Mom to (almost 6), (almost 3, CHARGE Association, CHD, ECMO 12

days, Bi-lateral Choanal Atresia, G-button, partial hearing loss), and

Emma (8 months)

Dallas, Texas

NPTQueenie@... wrote:

> hi everyone, looking for advice and/or encouragement! finally got her

> trach out 5 weeks ago, after having it all her life (8years). she is doing

> fine breathing and swallowing her secretions quite well. (they were concerned

> about this). the problem is the coughing out of her stoma. they do not want

> to surgically close the hole for another several months until they know she is

> o.k. and wont cough and rip the stiches in her trachea. so when she coughs we

> cover the hole and help her bring it our of her mouth and/or swallow. we

> tried covering it with tegaderm and guaze but htat gets wet froms ectroins.

they

> dont encourage us to do that b/c of bacteria forming whent he guaze gets to

> wet. this seems to happen after about an hour. i am discouraged in that i

> hope this is not a sign she cant handle the secretions. we are giving her

> alubuterol treatments 2-3 times a day thinking it may be allergy related. we

even

> had her on an oral steroid lsat weekf or 5 days.

> any thoughs/comments/suggestions would be greatly appreaciated.

> cathie, mom to

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

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

>

>

>

[Guest guest]

Cathie:

We had similar problems with after only three years of being

trached. I can imagine the stoma is really persistant after even longer

periods of time. The darned thing just wouldn't close on its own, and

was always a wet mess. The cough worried our ENT also, but having

it open was no good either. He finally decided to close it, and things went

very well. actually handled secretions better after it was closed

because they weren't " escaping " or seeping out before they got where they

needed to be so she could swallow them effectively.

The concern over possibly ripping out the sutures was there, but

coughed much less with the stoma closed. It was much less frustrating all

the way around.

BTW: This also happened with her g-button stoma after 9 years. And that

took a real fight with the GI surgeon to agree to surgically close it.

After lost 8 pounds in 5 days and dehydrated because everything came

out the stoma (resulting in a hospital admission for IV fluids) he finally

agreed. Looks like our kiddos just don't " close on their own " like is

typically expected.

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (14 on the 20th!) and (CHARGE+ and 11 on the 24th!)

Wife of Rick

oganm@...

problems after decannulation

> hi everyone, looking for advice and/or encouragement! finally got

her

> trach out 5 weeks ago, after having it all her life (8years). she is

doing

> fine breathing and swallowing her secretions quite well. (they were

concerned

> about this). the problem is the coughing out of her stoma. they do not

want

> to surgically close the hole for another several months until they know

she is

> o.k. and wont cough and rip the stitches in her trachea. so when she

coughs we

> cover the hole and help her bring it our of her mouth and/or swallow. we

> tried covering it with tegaderm and gauze but that gets wet from ectroins.

they

> dont encourage us to do that b/c of bacteria forming whent he gauze gets

to

> wet. this seems to happen after about an hour. I am discouraged in that

I

> hope this is not a sign she cant handle the secretions. we are giving her

> alubuterol treatments 2-3 times a day thinking it may be allergy related.

we even

> had her on an oral steroid lsat week or 5 days.

> any thoughts/comments/suggestions would be greatly appreciated.

> cathie, mom to

[Guest guest]

Marilyn,

I don't think they do anything " typically " ...they have their own ways for

everything! That's when you have to kick into " PP " (proactive parent)

mode...

Weir

Mom to Kennedy, 5 yr old CHARGEr, 14, 12 and wife to Graeme

New Brunswick, Canada

http://personal.nbnet.nb.ca/gweir

http://www.chargesyndrome.ca

RE: problems after decannulation

Cathie:

We had similar problems with after only three years of being

trached. I can imagine the stoma is really persistant after even longer

periods of time. The darned thing just wouldn't close on its own, and

was always a wet mess. The cough worried our ENT also, but having

it open was no good either. He finally decided to close it, and things

went

very well. actually handled secretions better after it was closed

because they weren't " escaping " or seeping out before they got where they

needed to be so she could swallow them effectively.

The concern over possibly ripping out the sutures was there, but

coughed much less with the stoma closed. It was much less frustrating all

the way around.

BTW: This also happened with her g-button stoma after 9 years. And that

took a real fight with the GI surgeon to agree to surgically close it.

After lost 8 pounds in 5 days and dehydrated because everything

came

out the stoma (resulting in a hospital admission for IV fluids) he finally

agreed. Looks like our kiddos just don't " close on their own " like is

typically expected.

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (14 on the 20th!) and (CHARGE+ and 11 on the 24th!)

Wife of Rick

oganm@...

problems after decannulation

> hi everyone, looking for advice and/or encouragement! finally got

her

> trach out 5 weeks ago, after having it all her life (8years). she is

doing

> fine breathing and swallowing her secretions quite well. (they were

concerned

> about this). the problem is the coughing out of her stoma. they do not

want

> to surgically close the hole for another several months until they know

she is

> o.k. and wont cough and rip the stitches in her trachea. so when she

coughs we

> cover the hole and help her bring it our of her mouth and/or swallow.

we

> tried covering it with tegaderm and gauze but that gets wet from

ectroins.

they

> dont encourage us to do that b/c of bacteria forming whent he gauze gets

to

> wet. this seems to happen after about an hour. I am discouraged in

that

I

> hope this is not a sign she cant handle the secretions. we are giving

her

> alubuterol treatments 2-3 times a day thinking it may be allergy

related.

we even

> had her on an oral steroid lsat week or 5 days.

> any thoughts/comments/suggestions would be greatly appreciated.

> cathie, mom to

[Guest guest]

could she be getting a cold?

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/

[Guest guest]

was decannulated at the age of four and he is now nine and we still

have not closed up the stoma yet. At first, he did still have sucretions

coming out which we would put a piece of gauze over it with paper tape (for

social reasons so he wouldn't cough and sucretions fly onto anyone

else). We would have to change it quite a few times throughout the

day. The hole is still there, but almost closed five years later. We

RARELY get any sucretions now. goes under water and will even try

to force air through there to blow bubbles...he's quite silly like

that. We saw his pulmonologist just this past month and he said we could

go ahead and get a sleep study to make sure he's not using that to help

move air while he's in his " deep sleep " but otherwise, we would try to

stitch it closed or his ENT offered to take a piece of skin from 's

thigh to put over the hole. It is interesting how many people I see now

that have had traechs in the past. It doesn't bother but

cosmetically, I'd like it closed. He is completely off any albuterol

treatments and has been for almost four years now.

Good luck!

Nicol

mom to 9 (cHaRGe), Jordan 5, Jenna 1

At 09:37 AM 7/18/2003 -0400, you wrote:

>hi everyone, looking for advice and/or encouragement! finally got her

>trach out 5 weeks ago, after having it all her life (8years). she is doing

>fine breathing and swallowing her secretions quite well. (they were

>concerned

>about this). the problem is the coughing out of her stoma. they do not want

>to surgically close the hole for another several months until they know

>she is

>o.k. and wont cough and rip the stiches in her trachea. so when she

>coughs we

>cover the hole and help her bring it our of her mouth and/or swallow. we

>tried covering it with tegaderm and guaze but htat gets wet froms

>ectroins. they

>dont encourage us to do that b/c of bacteria forming whent he guaze gets to

>wet. this seems to happen after about an hour. i am discouraged in that i

>hope this is not a sign she cant handle the secretions. we are giving her

>alubuterol treatments 2-3 times a day thinking it may be allergy

>related. we even

>had her on an oral steroid lsat weekf or 5 days.

>any thoughs/comments/suggestions would be greatly appreaciated.

>cathie, mom to

>

>

>Membership of this email support groups 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 CHARGE Syndrome Foundation web page

>at http://www.chargesyndrome.org

>6th International CHARGE Syndrome Conference, Cleveland, Ohio,

>July 25-27, 2003. Information will be available at our website

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

>

>

>

[Guest guest]

thank you so much for your imput on this. i am taking copies of all of these

thoughts with us to our ENT appt in a couple weeks to see if we can expidite

the closure of erika's stoma.

thats why i love this list!

cathie, mo to erika 8 CHARgEr