Re: vocal chord

December 6, 1999

Jeanne McMullen wrote:

>

> Steffi

>

> I can tell you our experience with Caitlyn's left vocal chord being

> paralyzed as a complication of her first open hear surgery and the right

> vocal chord compensating as you described.

>

> Caitlyn does choke a lot, really chokes--I mean Heimlich time. I think this

> is just as much if not moreso because she forgets to finish chewing because

> she's often in a daze and has poor body awareness. The poor body awareness

> also contributes to her overstuffing her mouth if someone is not there to

> remind her to chew before putting anything else in her mouth. And also her

> oral defensiveness (she has both extremes) with some textures. If she

> doesn't like the texture, she'll swallow it whole.

>

> She's had a swallow study and she passed everything except the thin liquids

> which they said were " pooling " causing a higher risk of aspiration though

> she did not aspirate during the study. Due to this find and her recent bout

> of pneumonia--her 3rd this year--they've ordered me to thicken her thin

> liquids with a substance called " Thick-It " . It's a Rx basically made of

> corn starch and it's tasteless and it thickens everything. Gross right?

> Well, she's drinking it. It's too soon to say if it helps but it's a pain

> in the neck. No more grabbing a quick glass of water for her. I mix it in

> for 5-10 sec than let it sit for 30 seconds. I know I know--be thankful

> she's feeding orally. Believe me I am.

>

> Friday she's having a saliva study done to see if she's aspirating on her

> saliva. If she is, I believe the plan will be either to remove some of her

> glands or to place her on a med that will dry up her secretions. I don't

> like either of these ideas given her problems with eating and choking, but

> then again, I'm just the mom, whoever asks me.

>

> Caitlyn's voice is not raspy at all, quite the opposite. It is a high

> pitched voice, very much like other little kids her age. Everyone I've met

> as called it quite angelic actually. I do wonder sometimes what it would've

> sounded like if the chord was not paralyzed, but then again, who cares.

>

> Jeanne

Jeanne,

MacKenzie is going to have an aspiration scan too. I've never heard of

the gland removal thing, could you be more specific.

Jeanie Colp

December 8, 1999

Thank you, . The incisions are actually healed now so we don't have to

do anything with them anymore.

We really found out the value of getting a second opinion about issues

concerning our daughter. Our ENT here in KC really missed a lot of stuff and

so did some of the other specialists. In Cincinnati we found out that 60-70%

of Aubrey's airway above the trach is blocked due to scar tissue from

intubations when she was first born. Even after 2 scopes by our ENT here in

KC, she still missed that. She just kept saying that Aubrey had too many

secretions and had to learn to wear the passy-muir valve all day long in

order to get rid of the trach. However, we have now found out how cruel it

was for us to keep trying to make her wear it when her airway above the trach

was so blocked. And all the doctors here in KC kept telling us that there

was nothing we could do about excess secretions. Well we found out in

Cincinnati that there is things you can do, such as the drool procedure we

had done. Another huge thing our ENT missed was that Aubrey's tonsils and

adnoids were very large and even if we got the trach out, she wouldn't be

able to breathe well thru her nose because of that. We also tried to get a

neurologist involved in KC and get an MRI done. Our ENT said that wouldn't

do any good - well, that is one of the things they also recommended in

Cincinnati and did (the MRI showed no brain stem problems - yea!). This

needed to be ruled out to ensure there wasn't something wrong neurologically

causing Aubrey to not swallow. Another thing we continued to ask the ENT and

her assistants here was whether or not it seemed to them that Aubrey was

aspirating her saliva - again, they didn't think so. Well, the study we did

in Cincinnati proved that she was.

Then we find out also in Cincinnati from the gastrointestinal doctor that

Aubrey's feeding button is in the wrong place causing her unnecessary

discomfort and possibly causing her stomach to empty slower. Well, the

doctors back here, including the surgeon that put it in the wrong place, had

us give her propulsid. Not only did we find out in Cincinnati that propulsid

causes your secretions to increase, the reason we needed to give it to Aubrey

was because of another error made here. In fact, the reason she has so much

scar tissue in her airway is because when she had stents in her nose from

choanal atresia surgery when really young, the intensive care nurses ripped

the stitches and a big chunk of her nose out because they were too aggressive

in their suctioning. She was in so much pain over the weekend that they had

to try and intubate her and really butchered her up and she almost died. All

because she was in so much pain from their mistake. They tried to hide it

from us and a surgeon told us the truth the following week about what really

happened.

I think I better quit at this point, there are more mistakes that were made,

but I could go on forever. I will just always know from now on to get second

opinions, never take no for an answer, etc. And mainly, go with your

instincts - if you think something is wrong or is happening, it probably is

and the doctor just doesn't want to deal with it, doesn't have enough

knowledge about it, and their ego won't let them send you to another person

who may know.

It gets really irritating for us to hear how the Children's hospital here is

" one of the top 8 in the country " and how they really brag it up, and we've

found thru experience that at least in our situation, it is very poor. The

problem is, it is the only one in the KC area. It is sad that we have to go

all the way to Cincinnati to help our daughter, but we did and will continue

to - I think it is our only hope.

The positive things are that we have at least some kind of plan now for

getting rid of the trach some day. If Aubrey does start swallowing better,

we will get her tonsils removed at some point, the scar tissue can be removed

from her airway thru surgery, and then we may be able to get rid of the trach.

Sorry for going on so long.

Bradley

December 8, 1999

Bradley, I have heard horror stories about Children's Mercy in KC. Is this

where you were? Wesley's NICU and specialists in Wichita are very good,

thank God, but they did consider sending us there at one time. I'm sure glad

they didn't!

Jacque

Austin's mom

Rose Hill, KS

December 8, 1999

Jacque,

yes, Children's Mercy and St. Luke's are the two hospitals. She was born at

St. Luke's and then transferred after a month and a half to Children's Mercy.

Bradley

December 8, 1999

,

we also never leave Aubrey alone in the hospital. Have you seen the reports

lately that in the United States they estimate that up to 98,000 people die

each year in hospitals due to incompetence?

Bradley

December 8, 1999

Bradley,

Please don't apologize for spewing it out here. I could write a book that would

scare the living daylights out of anyone in hospital right now. I know how you

feel although some of the mistakes that were made weren't as life-altering as

the ones made to Aubrey. It's discouraging when you are out and out lied to.

That's one thing that really irks me about this whole thing. That's why I damn

well make it my business to be as informed as humanly possible. Reading medical

journals into the wee hours, checking out new procedures, treatments, etc, while

trying to actually " do " all the stuff needed with Kennedy. To me, it was the

mistakes WE caught in time that really make us shudder sometimes. I " m glad the

lengthy hospital stays are over, and the one thing I learned from it is TRUST

NOBODY in hospital. We look after Kennedy24/7 in hospital. I would NEVER leave

her for one minute alone in hospital now. That's a sad comment but it's very

very true. I won't leave her in a room alone to use the washroom now. I could

go on and on about this, I can't believe after all I saw in the neonatal unit

and up on the floors that more kids don't die because of " mistakes " ...

I'll end here before I get too wild...

Mom to Kennedy 22 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

Re: vocal chord

From: Bradweis2@...

Thank you, . The incisions are actually healed now so we don't have to

do anything with them anymore.

We really found out the value of getting a second opinion about issues

concerning our daughter. Our ENT here in KC really missed a lot of stuff

and

so did some of the other specialists. In Cincinnati we found out that

60-70%

of Aubrey's airway above the trach is blocked due to scar tissue from

intubations when she was first born. Even after 2 scopes by our ENT here in

KC, she still missed that. She just kept saying that Aubrey had too many

secretions and had to learn to wear the passy-muir valve all day long in

order to get rid of the trach. However, we have now found out how cruel it

was for us to keep trying to make her wear it when her airway above the

trach