On Saturday, October 29, 2005, at 04:38 PM, Karen wrote:
>
> One of the problems with the problems with the long term Foley's is
> mould.
EWE!!! MOLD...??? I once saw the deflated balloon a bit dark, or
greenish, but chalked it up to bile (??) or gastric juices... If I
over feed her, she seems to dump the bile back into her stomach and
we'd see this horrid green gunk!! Oh gosh, early on when I was
following the specific feeds...She would reflux and have stomach
upset...if I vented her the contents would be green...It was a huge
problem...and it seem to go on forever..
Just curious, why have you stayed with the Foley's? Its unusual for
them to
> even use them these days, and if they do for them to not switch to a
> proper
> PEG or button with a couple of months.
I've written about this before, but in brief, At the time we tried the
button, we were still with that first DOC and her stomach was extremely
gassy....to the point when I opened the button "stuff shot out" maybe
that is normal...???
Also, I have four kids, and on the go...soccer, theater, swim...at that
point, that silly extra tube that extended from the button to the
syringe bugged me...It was one more thing for me to rinse, and if out
of the house for several hours, I needed to be sure it was rinsed and
bacteria free throughout the day....I know that sounds silly, but with
the 60cc syringes, I could feed her and wrap them up till I get home to
rinse...Having the "folley" as the tube, I could just feed and "plug"
so I wasn't having a feeding "production" in front of other
people...with water and rinsing etc.
Now fast forward! I have actually been thinking I might want to try
the button again...as Natalia is smart as a whip...She loves to grab
the end and "knaw on it"
I've used the "grabber" as a good chew toy, or other toys, but if she
is in the mood, she grabs the "folley" And if I am not right near her,
I'll find the plug out and wonderful juices all over her or my carpet!
(YUK!) We have been trying to get her to drink from a cup, and she has
figured out that if I have just fed her, she can "knaw on the folley"
and if the plug come out she can get a drink! It can be funny and
gross at the same time! :)
I'm use to changing these "folleys" about once a week, She really does
not fuss about the tape...but we're going to get new carpet...So I am
really considering the button...but I love the fact that her g-tube
opening stays so clear...I remember the button didn't seem to let the
skin breath? So there was a bit of redness and irritation.
Maybe it was just our experience...
I guess if we try it again she'll have to be re-measured...We go
through so many folleys, I would wonder if the button would last
longer, and how many to you keep on hand...??
I like having a supply of the folley's...never want to the the ER room
replacement thing again....
> Alex's has rarely been raw - but he has always been plagued with
> granulation. The rawness only happens when I let the granulation get
> out of
> control.
>
>
Not sure what you mean here? Sometimes I may see "stuff" around her
tube if I haven't given her a bath that day... or maybe I over fed her
and a bit of formula/juices worked their way up the tube??? But I
just pick it off...no big deal, but if I leave it there, I have noticed
it creating a bit of redness, so that is why I pick it off if I see
it...
Is this granulation???
Are you folks in chat?? Guess I should try and figure out how that
works...
I think I have a fire wall. or something...but will check it out...
ThereseAnn
mom to Natalia t13 5 yrs.
Building ___ooOOoo__ Rainbows
www.trisomyonline.org
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