Re: Digest Number 4201

[Guest guest]

Venting, blood from button sounds like my life. Cassandra has had every

possible downside to the fundo and button. So much so that after ten months

of hospitalization and 15 rounds of theatre,for major surgeries, we almost

lost her when her button went in. It was leaking so badly, that no

nutrients was in her body, her body started to shut down, they had to bring

a warming trolley from neonatal to infants to keep her body going. Finally

an ICU Dr. came and put a line in her scalp , not that it is the chosen way

to give I.V. but her veings collapsed. It was terrible. Eventually the

leaking stopped, with time to heal. Then no one told us , even living in

the hospital why she cried when being fed and screamed after, with dark

discharge coming out of her stomach. Finally venting was suggested which

stopped that. Sowe vented before each feed and if she looked bloated or

with all of our retching problems. She has bled from the sight and her

stomach twice, both had been indication of trauma, having bumped the sight,

her favorite trick going down slides on her stomach. Now we have been told

not to vent regularly because we are not allowing her stomach to expand in

size. At four years of age, Cassandra can only tolerate 150mls. We do give

her water during the day not just to flush because after we recovered from

the initial leakage, we then encountered a terrible episode of bowel

blockage, can happen with fundos and buttons. We are now cautious with

bowel movements, and when her tummy is distended, I give her yakult, it

cleans her system out. Gut health is perimount, as it also effects SLEEP,

BEHAVIOR, and SECRETIOns, all of our other favorite joys.

Best of luck,Marie mommy to 4year old Cassandra CHARgEr West OZ

Re: VENTING!!! what is it? why has no one told me!!!!!

You are not alone. I did not find the doctors very helpful in explaining

how to do this or demonstrating it. We learned more about how and when to

vent from another parent in our Parent-2-Parent group! When we had asked

our pediatrician (who is very competent) about how you knew when to do

it--he just said " we would know " based on how Evan was looking and acting!

Hello...it's not that intuitive at first!

(mom to Evan 8.5 mos)

Lesley Chan wrote:

Hi all

I have seen this word on the listserv and associated it with annoyed

or venting your views, which where i come from that is how this word

is used. so never paid attention to this word.....ooooppps

however, today we went to radiology to have a new gj tube fitted as

the last one was the wrong size and she also has billious fluid

coming from her stoma hole in her stomach ( mickey button in stomach

and on xray is passed to the jejunum as a temp measure for the

reflux)

today i said she is retching a lot and needs to bring stuff up

usually frothy mucous , and the radiographer said you can vent her

there is a different type of mic-key button, with two ports, and i

should draw back some of the stomach juices to ease with build up

etc....

I didnt have a clue i could do this...although i cant with the

button i have its not got the two ports, but i asked could this be

mentioned at the meeting i am waiting for....she should have one if

it will help her. so hopefully they will order one after the group

meeting.

question.......why if it would help has none of the doctors etc told

me about it or fitted it before now given all her reflux and chronic

lung disease through the aspirations and frequent pneumonias!!!

i sometimes feel frustrated that if i dont search things out they

dont get mentioned....

DOES ANY ONE VENT THEIR CHILDREN

DOES IT HELP

HOW DO YOU KNOW HOW MUCH TO TAKE OUT

THANKS LES xx

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