Re: Taping the button overnight

[Guest guest]

In a message dated 7/1/99 10:03:41 AM US Eastern Standard Time,

gweir@... writes:

<< Here's my question: we are doing an " X " across her button, and when she

gets up in the morning it's all bloody around there, not like dripping, but

blood caked. Should I be worried about this? She's showing no signs of pain

or anything and it's working great so far. <knock wood> >>

,

Tryny has had so many different problems with his button, and small amounts

of caked blood has surely been one of them. Tryny's GI and his surgeon have

both seen this from time to time and they both agree that if it doesn't seem

to bothering Tryny, it's not a worry. They say it is usually caused by the

button shifting during the night when he rolls around.

As for the " X " over the button, we have found a couple of different ways to

do it:

1. Tape an " X " over the button and tubing, attaching to the stomach.

2. Tape a " thin " piece of tape in a cross " X " ( like they do with the IV " s)

place a thin piece of tape " under the button " and cross over the tubing. If

Kennedy doesn't " disconnect " the tubing herself ( like Tryny does now, he

likes to be a big boy I guess, so he disconnects himself every morning), but

before he started that, we used the " cross X " and that way he had less tape

on his skin ( having a laytex allergy, tape is " bad " ).

Then after taping the " button " we place tape on his side, and down his leg (

piece right under the leg of his pull-up, and two more, stopping right before

his knee). We have the pump on an IV pole at the side of his bed, down by

his feet. This way it helps from him getting the tubing wrapped around his

neck (which he has done on several occasions unfortunately, and that's very

scary). It also helps keep the feeding tubing away from his C-PAP tubing and

his apnoea monitor wires.

Hopes this helps and if you need anything further just ask away.

Debra

[Guest guest]

Debra,

thanks for the quick reply. I believe the bloody stuff is from her shifting

around alot while asleep too. So far, we just " x " the button, leave a

little curl of slack and tape a piece of the tubing to her diaper, run it

out her p.j's and tape a piece going down her leg. I, too am trying to keep

the tape to a minimum as Kennedy has sensitive skin. Thanks for all your

help and suggestions. I moved her IV pole down to the end of the bed {it

used to be at her head} and that seems to have helped as well.

Mom to Kennedy 17 mos old CHARGEr, 9, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

[Guest guest]

-

Since we're off the tube, I feel like I'm no longer an " expert " but I

wanted to agree with what Debra said about the blood. Aubrie would get

that too sometimes. I also think it was from the tube shifting or

getting pulled in the night. Of course, I did what I could to avoid

that cuz it didn't seem like a good thing, but it never caused any

damage and the doc was never alarmed by it. It sounds to me like you're

getting this whole thing under control very well.

Michele

Aubrie's mom

[Guest guest]

In a message dated 7/1/99 7:59:49 PM US Eastern Standard Time,

gweir@... writes:

<< run it

out her p.j's and tape a piece going down her leg. I, too am trying to keep

the tape to a minimum as Kennedy has sensitive skin. >>

,

Another suggestion we found helpful ( when Tryny would wear pj's that is),

is to get " footed " pj's, cut a small hole in the heal or toe area and run the

tubing through the hole. Especially if the pj's snap around the waist, that

makes it " doubly " difficult for them to get to the tubing to pull it out.

And the best tape we have found for Tryny is " satin " tape (the same as the

surgical tape they use in the hospital). Our medical supply comp. delivers

it every month along with the rest of his supplies. It sticks the best and

seems to cause the less irritation.

Never hesitate to ask anything of me, if what I have learned " the hard way "

(through " trial and error " ) can save someone else from having to learn the

same way, I'm more than happy to share it.

Debra

[Guest guest]

In a message dated 7/2/99 7:44:20 AM US Eastern Standard Time,

gweir@... writes:

<< now if I could just find that darn

hearing aid..... >>

,

Hello again. I wanted to let you know that Tryny has both of his hearing

aids ( around this huse somewhere, he hasn't used them since before his CI

surgery and that was 2 years ago) so I'm not sure where they are, but I will

look for them if you could use them. You would have to get new molds made

and have them fine tuned for Kennedy's ears, but it would save you having to

purchase another aid. If you're interested, let me know and I'll tear this

house apart looking for them.

Debra

[Guest guest]

Michele,

Thanks for the vote of confidence, now if I could just find that darn

hearing aid.....

Mom to Kennedy 17 mos old CHARGEr, 9, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

>

>

>-

>Since we're off the tube, I feel like I'm no longer an " expert " but I

>wanted to agree with what Debra said about the blood. Aubrie would get

>that too sometimes. I also think it was from the tube shifting or

>getting pulled in the night. Of course, I did what I could to avoid

>that cuz it didn't seem like a good thing, but it never caused any

>damage and the doc was never alarmed by it. It sounds to me like you're

>getting this whole thing under control very well.

>

>Michele

>Aubrie's mom

>

>

>---------------------------

[Guest guest]

,

Here's a funny on lost aids.. lost his first one about

three months after he got it.. I looked for three weeks for

the dern thing then decided the heck with it and filed an

insurance claim and got a new one.. We lucked out in

that the mold company still had the form for his mold so

we just ordered a new one.. two weeks later all is in, I

take him down for a fitting.. he goes to school the next

day and I have to hunt for some bank reciept or

something.. forgetting that I had changed purses.. well

guess where the old aid was ?? Yup.. in the old purse.. I

guess we had been out someplace and he'd taken it off

and I had put it in an inside zipper thing ..

In the way that all things seem to go.. I found the old one

the day after we got the replacement.

Casey

charge@...

minnow@...

Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE.

Cobb California

ICQ UIN# 728514

AIM Buddy List: ZeeCasey

[Guest guest]

Debra,

I never thought about the cutting the hole at the foot. We cut a small hole

on the side of her sleepers {the ones without button holes to stick it out

around}, but I " ll remember that as she gets older and " badder " pulling it

out herself! As for the tape, we use three different kinds! 3M Micropore

for the " X " on her button, the satin tape you mentioned for the tape across

her diaper, and 3M Transpore {the waffle pattern looking stuff} for on her

clothes. This seems to work the best so far.

Thanks again...

Mom to Kennedy 17 mos old CHARGEr, 9, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

>From: DW33333333@...

>

>In a message dated 7/1/99 7:59:49 PM US Eastern Standard Time,

>gweir@... writes:

>

><< run it

> out her p.j's and tape a piece going down her leg. I, too am trying to

keep

> the tape to a minimum as Kennedy has sensitive skin. >>

>

>,

>

>Another suggestion we found helpful ( when Tryny would wear pj's that is),

>is to get " footed " pj's, cut a small hole in the heal or toe area and run

the

>tubing through the hole. Especially if the pj's snap around the waist,

that

>makes it " doubly " difficult for them to get to the tubing to pull it out.

>And the best tape we have found for Tryny is " satin " tape (the same as the

>surgical tape they use in the hospital). Our medical supply comp. delivers

>it every month along with the rest of his supplies. It sticks the best and

>seems to cause the less irritation.

>

>Never hesitate to ask anything of me, if what I have learned " the hard way "

>(through " trial and error " ) can save someone else from having to learn the

>same way, I'm more than happy to share it.

>

>Debra

>

>---------------------------

[Guest guest]

Debra,

I will keep that in mind if our hearing aid insurance gives us any problems.

I sent the money in a couple weeks ago, and I'm seeing the audiologist on

Tuesday so I'll go from there. I'll keep your offer in mind though if

troubles arise...

Mom to Kennedy 17 mos old CHARGEr, 9, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

>Hello again. I wanted to let you know that Tryny has both of his hearing

>aids ( around this huse somewhere, he hasn't used them since before his CI

>surgery and that was 2 years ago) so I'm not sure where they are, but I

will

>look for them if you could use them. You would have to get new molds made

>and have them fine tuned for Kennedy's ears, but it would save you having

to

>purchase another aid. If you're interested, let me know and I'll tear this

>house apart looking for them.

>

>Debra

[Guest guest]

Casey,

Gotta love that 's Law, eh?

I figure the same thing will happen to me too!

Mom to Kennedy 17 mos old CHARGEr, 9, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

,

Here's a funny on lost aids.. lost his first one about

three months after he got it.. I looked for three weeks for

the dern thing then decided the heck with it and filed an

insurance claim and got a new one.. We lucked out in

that the mold company still had the form for his mold so

we just ordered a new one.. two weeks later all is in, I

take him down for a fitting.. he goes to school the next

day and I have to hunt for some bank reciept or

something.. forgetting that I had changed purses.. well

guess where the old aid was ?? Yup.. in the old purse.. I

guess we had been out someplace and he'd taken it off

and I had put it in an inside zipper thing ..

In the way that all things seem to go.. I found the old one

the day after we got the replacement.

Casey

charge@...

minnow@...

Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE.

Cobb California

ICQ UIN# 728514

AIM Buddy List: ZeeCasey

---------------------------