Re: Re: speaking with a trach

September 14, 2005

-

A speaking valve will not fit on a hollinger trach. When was about

ten years old, he changed to a Shiley trach. This had a much larger opening

and stuck out much further from his neck. The larger opening made it very

frustrating for him, as he was used to being able to speak easily, and the

increased airflow through the trach was irritating to his lungs - so we

taped it shut with surgical tape. We tried a passy-muir valve for a while,

but it needed frequent cleaning because the higher profile shiley caused him

to cough more (because it would get bumped from outside so much). The

change to a shiley was meant to be brief, as he was scheduled to be

decannulated within months - but it ended up being three years.

Best of everything to you and yours-

Yuka

Re: speaking with a trach

> Yuka, You have been of help to me many times with your trach

> experiences. Thanks so much. This gives me hope and the feeling that

> I don't need to research everyday regarding vocal chord paralysis,

> etc. Did your son ever use a speaking valve?

>

September 15, 2005

Michele,

Makenna was trached due to bronchio-, laryngo- and tracheo-malacia.

Basically a very weak, floppy airway. She would do fine breathing in but on

expiration her airway would collapse. She had a lot of difficulty keeping

her oxygen levels up and could not eat by mouth at all as she would turn

blue and her heart rate would go way down.

Makenna's ENT was ready to send us to Dr. Cotton (Cincinnati) for a second

opinion about reconstructive airway surgery. She was having terrible time

with secretions and continued aspiration. Her ENT did a DL bronch and

decided that she needed stronger reflux meds. He contacted her GI doc who

changed her meds. We repeated the scope in 3months time (I think) and he

couldn't believe the change. We never actually say Dr. Cotton.

We actually just didn't upsize her trach. She started having a leak around

the trach and she handled this without difficulty. We asked about weaning

her off and he told us to keep the smaller trach in and let the air escape

to see how well she tolerated it as she grew. Since she was doing so well

we played with the Passy Muir and the cap. Like I said she didn't like the

Passy but the cap was great. They told us we would have to build up her

tolerance but they put it on in the office and she wore it for 30 minutes no

problem. She was soon wearing it all day except when sleeping. I think we

may have gone down in size a from 4.0 to 3.5 but she was still on neonatal

sizes anyway.

Let me know if you have more questions.

-- speaking with a trach

>

> Carmen is 15 months old and has a trach. I've only heard her " voice "

> twice, when her trach was plugged and she started crying. It was a

> beautiful sound, even though I had to emergently change her trach. I

> was just glad to hear that she had vocals. However, she's never been

> able to get air around her trach to make sounds other than those I've

> metnioned. We tried a Montgomery speaking valve, and while she

> tolerated it well, she never made sounds with it on. I'm wondering if

> anyone out there has any wisdom for me. My ENT doesn't see this as a

> major priority right now, but I am bracing myself for what this all

> means. She does have a narrow airway beneath the vocal chords and has

> a recessed tongue, whereby I'm sure it's difficult for air to get

> through. Should I try a different valve? Should I not focus on this

> right now? Has anyone else had this happen, only to fnd that their

> child could make sounds later, once the trach came out? Could this

> mean that Carmen will never be able to speak? We are signing with

> Carmen, and she is picking up those concepts. Thanks to all who can

> help shed some light on this issue!

>

> , mom to Zach 4 years and Carmen 15 months (CHARGE)

>

> 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@c... or visit

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

Canada

> http://www.chargesyndrome.ca, or email info@c... " >information

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

> info@c...

> 8th International

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

available at www

> chargesyndrome.org or by calling 1-.

>

September 16, 2005

>,

Makenna aspirated from swallowing, even her secretions. She has a Nissen

so we don't think she was aspirating from the reflux, however, she could

have been because the reflux was coming up high enough to cause swelling

of the airway. She was put on robinol for secretions (had to be very

careful with the dosage d/t drying out). After her DL bronch she was put

on Prevacid comp. It is a liquid form of prevacid (goes down the Gtube

much easier) Happpily, Makenna now eats by mouth and can take nectar

thick liquids (when she will cooperate.) I believe getting the trach out

made her so much healthier! We have seen tremondous growth

developmentally and physically in terms of eatting, breathing, being happy

since that trach came out.

Her pulminologist just said she is on a relatively low dose of the

prevacid 5mL per day and thinks when her asthma acts up we should increase

it to 5mL twice per day. She has fought asthma in the fall and spring

like clockwork since she was an infant. He thinks it is a vicious circle

with allergies affecting secretions affecting reflux, affecting swelling

and breathing and on and on. But that is another issue all together.

, Thanks for all the background info. Now, when Makenna had

> aspiration, was it from reflux only or was it also from swallowing on

> the way down? What med was the on for her aspiration? This is a huge

> problem for us too--and while carmen has a floppy airway, she also has

> a narrow one, along with a recessed tongue.

>

> , mom to Carmen 15 months (CHARGE) and Zach 4 years

>

>> > ,

>> >

>> > I don't know if I can be of much help but I will tell you our

> story. My

>> > daughter is now 4.5 and is no longer trached but she received her

>> trach at

>> > 15 days old. And we also never heard her voice. She was so weak

>> before the

>> > trach she couldn't cry. Anyway, Makenna didn't voice until we started

>> > trying to wean the trach size down. We tried the Passy Muir

>> speaking valve

>> > and she couldn't tolerate it, however, she learned to plug her trach

>> with

>> > her finger and would voice that way. Once she was doing that on a

>> regular

>> > basis we started capping her trach and putting smaller trachs in.

>> Now the

>> > girl is never quiet!!! She doesn't have a lot of words (verbally)

>> maybe 8

>> > to 10 but she vocalizes non stop and is quite loud d/t her hearing

>> > impairment. Phone conversations and the TV usually have to wait

>> until she is

>> > sleeping because we can't hear over her There is hope, you just

>> have to

>> > find what is right for Carmen.

>> >

>> > I don't know her health status, but some doctors don't think things

>> are too

>> > important because they can't see the potential in our kids. Yes

>> they have a

>> > lot going on but they are fighters and survivors. You know if she can

>> > handle it and if is important to your family right now. Good Luck,

>> >

>> > -- speaking with a trach

>> >

>> > Carmen is 15 months old and has a trach. I've only heard her " voice "

>> > twice, when her trach was plugged and she started crying. It was a

>> > beautiful sound, even though I had to emergently change her trach. I

>> > was just glad to hear that she had vocals. However, she's never been

>> > able to get air around her trach to make sounds other than those I've

>> > metnioned. We tried a Montgomery speaking valve, and while she

>> > tolerated it well, she never made sounds with it on. I'm wondering if

>> > anyone out there has any wisdom for me. My ENT doesn't see this as a

>> > major priority right now, but I am bracing myself for what this all

>> > means. She does have a narrow airway beneath the vocal chords and has

>> > a recessed tongue, whereby I'm sure it's difficult for air to get

>> > through. Should I try a different valve? Should I not focus on this

>> > right now? Has anyone else had this happen, only to fnd that their

>> > child could make sounds later, once the trach came out? Could this

>> > mean that Carmen will never be able to speak? We are signing with

>> > Carmen, and she is picking up those concepts. Thanks to all who can

>> > help shed some light on this issue!

>> >

>> > , mom to Zach 4 years and Carmen 15 months (CHARGE)

>> >

>> > 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@c... or visit

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

>> Canada

>> > http://www.chargesyndrome.ca, or email info@c... " >information

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

>> > info@c...

>> > 8th International

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

>> available at www

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

>> >

September 17, 2005

Thought I would put in my two cents. Maya weras a modified passy valve. We

will be trying once again next month to see if she can handle a non-modified

passy valve (but I have doubts). Her lungs are strong, so she tends to pop off

the non modified valve and shoot it across the room, so her ENT punched this

teeny tiny hole in the valve, so a little air can go out when she breathes out.

It makes all the difference, it helps her secretions a lot when she wear the non

modified valve, and she can clear her secretions, which often results in her

shooting secretions across the room at us if they are thin secretions. the

negatives of this modified valve is that this summer she would dry up a bit and

cough enough that I would put her regular nose back on. Also the hole starts to

move and can get placed behind the bars of the pasy valve, so it works like a

non modified valve, which causes Maya some distress, so I would NEVER let your

child wear even the non modified valve unattended,

because the hole can get covered. But, if you are like me, you child is rarely

unattended. Maya does not sleep with it on, she wears her mist collar to keep

her moist. We are hearing more and more noises from her, particularly with the

modified valve on. once in awhile I will hear her make noise with her regular

mini vent (nose) on. I hear her most when she cries hard (which is rare) or is

very excited! She did not make a sound until about 3 months ago...I think her

airway is just getting bigger. You might check with your ENT about giving you a

modified valve, they just need to punch a tiny hole into the valve (like the

size of a pencil tip). Hope this is helpful.

Marty

Mom to Maya age 14 months

kjsusil@... wrote: