----- Original Message -----
From: "Therese"
> For those at all interested in the Foley as a G-tube...
> Ours has the balloon. Can't imagine it staying where it is suppose to
> with out one?
Thats the problem - they didn't!!!
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.
One of the problems with the problems with the long term Foley's is mould. I
will never forget when they changed Alex's once and it was soooooo mouldy -
YUK!! Other times I didn't notice it, but this time it must have grown
rapidly. It happens because the Foley's are not silicone but a natural
material, even the silicone Foley's are not "pure" silicone and the gastric
juices eat the silicone layer and then the food in the stomach feeds the
mould and allows it to grow on the non silicone layer.
With Alex they used the Foley's for a couple of reasons
1) It was cheaper than a proper PEG. PEG's at that time were $95 - the
Foley's were $12. $16 for the one with the balloon.
2) The surgeon and GI thought I was a neurotic mother and that the feeding
tube would make no difference to Alex's weight or development.
3) It was supposed to be temporary - for 6 weeks, until the tract was
established and enlarged - then they planned to switch to a Bard. The Bard
was their preference because they were more cost effective (Mic-Keys are
less robust and so need changing more frequently and are therefore more
expensive in the long run) They were so convinced that there was nothing
wrong and that I just wanted it as a "fad" and would therefore give up when
the novelty wore off. Thats why the 6 weeks turned into 6 months before he
got a proper feeding tube.
In full - they were convinced that there was nothing wrong with Alex and
that it was all in my mind (and this was despite everything they had found
when they did the pre-surgery testing!!!) But of course they didn't know
about the T-18.
They didn't agree with the pediatrician that it was wrong developmentally
for Alex to spend so long focussing on meals. And they certainly didn't
agree with me that more meat on his bones would make him less sickly. To
them Alex was just meant to be small and "delicate" According to them he
would be fine if I just relaxed.
It was the same GI who wrote in a letter to the pediatrician that I WAS a
neurotic mother. (Its one thing to think it, but to put it on paper!!) It
was when I went back after the tube placement and complained that Alex had a
"sugar" problem. I was neurotic, there was nothing wrong, if he was
hypoglycemic he would have been admitted after a fit and gone into a
hypoglycemic coma. Of course he also didn't believe me that I set the alarm
around the clock so that he was fed every three hours, during the day AND
during the night. Alex never went long enough between feeds to go into
hypoglycemic shock. And I mean NEVER.
When Alex was finally tested for hypoglycemia he was of course severely
hypoglycemic and did the fit, coma thing for the doctors right in front of
their eyes. I am so glad that it was caused by an enzyme deficiency because
if it had been insulin caused I am positive they would have screamed
Munchausens.....
Neither the surgeon or the GI have been game to face me since that!! For a
long time if the GI saw us coming in the hospital he would cross to the
other side of the hall to avoid me!!
The last time I ran into the surgeon he looked at Alex skipping down the
hall, looked at me and said "is that........" I nodded, he said "does
he....." and I nodded. He shook his head and walked away. I think that said
it all!!!
In hind sight it was a fortunate thing - just tough to go through it. Before
they gave Alex the feeding tube they NEVER did permanent feeding tubes for
children with T-18. I used to see NG tubes in kids who were 9 - 12 months
old and even older.
They still tried it even with a friends daughter. She was a nurse and really
wanted to get rid of the NG tube because of the inconvenience. Even though
she herself was a Theatre sister its actually not allowed for even her to
change the feeding tube at home. She must get the community nurse to do it,
or take her to the ER and get them to. They tried the "we don't do that for
children like this, its a waste of time and you aren't being realistic etc
etc" Then she said "oh but you did for Alex" - end of arguement - she got
her Mic-Key a month later. And BTW this mum was told she would die within
three months. When the mother said of what, they said nothing in particular
these children just die. Well she is now THREE years old and thriving!!!!
And sooooooooo pretty!!
> We've never had any type of raw or irritation doing it this way. I
> alternate the left side to the right...each day...
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.
It started with the Foley's and they told me it was "normal". It is for
some, especially at first. But its not "normal" for a lot of kids, they end
up with the really neat looking ones. Looking back the immunologist thinks
it was caused by the allergy to latex starting. Granulation is the bodies
natural response to try and get rid of a foreign body. He thinks Alex's body
tried very hard to get rid of the foreign body, not just because it was
foreign, but because he was producing so many histamines as well.
Since he got the proper feeding tube the granulation has been easy to
control, but its never gone away. When I dispair about the fact that its not
neat and tidy like other kids, the immunologist puts it in perspective. Alex
is partially immune suppressed (IgA deficient) and so should be prone to all
sorts of chest infections. However the rest of his immune system is so
strong (as shown by the granulation) it sort of compensates for the antibody
deficiency, and we don't see many chest infections. (of course we take all
precautions as well) When he puts it like that I guess I can live with the
granulation as a trade off for less chest infections.
"We come to love not by finding a perfect person, but by learning to see an
imperfect person perfectly"
Sam Keen
Keep Looking For Rainbows!!
_--_|\
/Karen \
\ _.--._ /
v Karen, Mum to Alex (11 years, T-18 Mosaic)
http://members.optushome.com.au/karens
Building ___ooOOoo__ Rainbows
www.trisomyonline.org
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