Re: Update on Colin-'s G-Tube/Nightmare

[Guest guest]

I am so sorry this is happening to you. Please keep us updated on

what you learn, and these types of things we can put in the

Guidebook.

Jenn

>

> Hi to all - I haven't been in touch lately, but wanted to give you

> all a heads up for those on the G-Tube. Sunday night our son Colin-

> stood by my bed and called for me which started happening

more

> often since he figured out how to un-hook himself from his G-Tube.

> Usually, we bring him back to bed and hook him back up and all is

> well, but this time, he smelled of vomit and his entire button was

> on the floor of the hallway still inflated. He had pulled the

entire

> button out through the incision in his stomache. Devastated, we

> tried to calmly put it back in, but it wouldn't go. Apparently the

> Doctor is wrong when they say you have 24 hours b/c this had only

> been a short time and it was closing up. We had to call 911 at

2:30

> in the morning in the middle of the snow storm to have him brought

> to th emergency room. No doctor there could fix it b/c they didn't

> know what to do - so they put a cathedor(Spelling) in the button

> spot to prevent it from closing all the way. Of course b/c

yesterday

> was a Holiday, his surgeon was nowhere to be found. We have to

bring

> him to NY today to see what is next. I don't know what to do now.

I

> told my husband that obviously it doesn't hurt him to pull it out

> and he has been unplugging himself constantly. Finally, after a

> year, my worst nightmare has happened. I always worried about what

> if he pulls it out and now I know. I just wanted to share with the

> group. I will email again when we find out what happens.

> Thanks.

> M.

> (mom to Colin- 4 RSS and Gillian 7 months non-RSS)

[Guest guest]

Hi ,

has managed to pull his out as well. We were told that you

only have 1/2 hour to put it back in before the hole starts to

close. We had a problem once when he pulled it out at school and

the nurse had trouble getting it back in. I know that most

hospitals don't keep spare buttons, which is why we were told that

if we ever had to go to the hospital to have the button re-inserted

we better have an extra of our own to bring with us.

I hope your problem was solved relatively easily earlier today.

Judith, Steve, (RSS) and (non RSS) 5 year old twins

[Guest guest]

oh my i hope all goes well it must have ben really hard for everone.

cara mom to jacob

blacklab_4 wrote:

Hi to all - I haven't been in touch lately, but wanted to give you

all a heads up for those on the G-Tube. Sunday night our son Colin-

stood by my bed and called for me which started happening more

often since he figured out how to un-hook himself from his G-Tube.

Usually, we bring him back to bed and hook him back up and all is

well, but this time, he smelled of vomit and his entire button was

on the floor of the hallway still inflated. He had pulled the entire

button out through the incision in his stomache. Devastated, we

tried to calmly put it back in, but it wouldn't go. Apparently the

Doctor is wrong when they say you have 24 hours b/c this had only

been a short time and it was closing up. We had to call 911 at 2:30

in the morning in the middle of the snow storm to have him brought

to th emergency room. No doctor there could fix it b/c they didn't

know what to do - so they put a cathedor(Spelling) in the button

spot to prevent it from closing all the way. Of course b/c yesterday

was a Holiday, his surgeon was nowhere to be found. We have to bring

him to NY today to see what is next. I don't know what to do now. I

told my husband that obviously it doesn't hurt him to pull it out

and he has been unplugging himself constantly. Finally, after a

year, my worst nightmare has happened. I always worried about what

if he pulls it out and now I know. I just wanted to share with the

group. I will email again when we find out what happens.

Thanks.

M.

(mom to Colin- 4 RSS and Gillian 7 months non-RSS)

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

[Guest guest]

His hole is not open enough to get the button back in or at least

Colin- makes it seem like we are killing him by trying to get it

back in. Actually blood started squirting at us - sorry to be so

descriptive, but it wouldn't just go back in for some reason.

Thanks for the support. M.

> >

> > Hello Everyone - Well we survived Colin- pulling his button

> out

> > of his stomach which lasted for two weeks when he decided to do

it

> > again. Since my husband and I knew that Valley Hospital would

not

> be

> > able to help us, we had to wait until the morning when his Dr.

at

> > Columbia Presb. was available. This would be over 8 1/2 hours

that

> > his hole would be open. Apparently, the Dr. never gave us

another

> > button or syringe to inflate the button once we got it back in -

> we

> > were helpless. When we arrived in NYC I had to say that what I

> > witnessed to get the button back in was worse than his

> complications

> > to the surgery a year ealrier. I would never wish this upon even

> my

> > enemy to watch their child suffer this way. Needless to say, the

> > buttin was put back in. It is such a shame that Colin- has

not

> > made the connection between the pain and pulling the button out.

> > Thankfully, he has been drinking the Pediasure since we got him

> back

> > home from the hospital and so far we have not had to hook him

up

> at

> > night. I hope it never happens again. Thanks for listening. PS -

> He

> > has a check up in two weeks with his Endocronologist to see how

> much

> > he has grown.

> > M.

> > mom to Colin- 4 RSS/g-tube/growth hormone and Gillian 8

months

> > non-RSS

[Guest guest]

Thank you for giving us more information than our Ped surgeon has.

> Hi ,

>

> Did you know that ANY needle-nose syringe will work with the

button??? Since

> Colin- has a g-tube, you should have a supply company, right?

They can

> be ordered through there. I use either a 5cc or a 10cc syringe.

has

> an 12F 2.0cm AMT Mini button.

>

> Another idea. If you're able to deflate the balloon right away

with a

> needle-nose syringe, but still have problems getting the button to

pop back

> in the stoma, try using KY jelly. We have always just used

Vaseline, but

> when we visited the Ped Surgeon, he recommended the KY.

>

> We tried it for the first time when demonstrating the button

change at

> 's school, and the button popped in MUCH easier than

normal!! We put

> a some on the button and then globbed (great medical term here!

LOL) it over

> the stoma, and the button popped right in!

>

> The Ped Surgeon also said that you can use liquid dish soap if

nothing else

> is available. In fact, he preferred the dish soap to the Vaseline

that we'd

> been using!! I was VERY surprised!!

>

> Hope this helps!!

> Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 32.8 "

(83.3cm),

> G-Tube)

[Guest guest]

Hi ,

It's nice to know that I could be of some help. From the sounds of it, it

might be time to change ped surgeons! Or to try being more assertive with

this particular Dr about what you need to know.

Another thing that I thought of that might help, is that we check the

balloon contents at least once every two weeks. seems to lose about

a cc of sterile water out of his balloon in that amount of time. By keeping

a consistent amount of fluid in the balloon, there is less chance of it

popping out.

If there is anything else I can help you with, please feel free to contact

me either here or privately at pcpets @adelphia.net (no spaces)

Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 32.8 " (83.3cm),

G-Tube)

[Guest guest]

I had a sit down with my son shortly after I emailed the group and

told him that if he would drink the Pediasure we wouldn't have to

hook him up and so far he has been. For some reason, he is eating

and drinking the amount we usually give at night, plus has finally

broken the 35 pound zone. I know most of you are cringing as I write

this, but we have had our share of trauma, episodes to the

hospitals, sick days and nights, vomiting etc. as many of you are

and will continue to have. I think for us, personally, my daughter

coming into his life has made a world of difference for him. I truly

believe she was sent to help him. He sees her eat and he eats. He

sees her take her cup, he wants the cup. This is how it has been for

a few eeks now and the weight is staying on. Ihope it continues, but

cannot say for sure as we have had triumph turn to failure in a

blink of an eye as I am sure all you have experienced.

Thanks.

M. mom to Colin- 4 RSS/Gillian 8 1/2 months non-RSS

> Hi ,

>

> It's nice to know that I could be of some help. From the sounds of

it, it

> might be time to change ped surgeons! Or to try being more

assertive with

> this particular Dr about what you need to know.

>

> Another thing that I thought of that might help, is that we check

the

> balloon contents at least once every two weeks. seems to

lose about

> a cc of sterile water out of his balloon in that amount of time.

By keeping

> a consistent amount of fluid in the balloon, there is less chance

of it

> popping out.

>

> If there is anything else I can help you with, please feel free to

contact

> me either here or privately at pcpets @adelphia.net (no spaces)

>

> Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 32.8 "

(83.3cm),

> G-Tube)