[tri-med] Re: NEED GT INFO - Sorry

<<  Marissa is extremely activity, how will this effect it? 
 She is also a picker - won't she pick at the button? >>

>My hunch is that if Fawna's Philina mostly leaves her's 
>alone, Marissa will probably be able to get used to one, 
>too. 

April,

I confirm.  A few thoughts on this......  

I told the doctor I wanted a Mic-Key so I'd be able to change 
it myself.  It's easier then putting in a Foley, so you know 
you can do it.  She pulled it out....I popped it back in...
Repeat, and rinse (as my buddy Jim would say).  

Seriously the child pulled it out 3 times her first week 
home from the hospital.  Biggest worry there is how fast 
that hole can close up.  And it's fast.  Within hours the
hole is too small to get a tube back in yourself.

I was looking into getting a custom fitted g-tube guard 
designed and made by either a medical supply or OT, but I 
came up with a working alternative first.  I upped the water 
in her retention balloon by a couple of cc's, and it stopped 
coming out when she picked at it.  We do still have an 
occasional oops, like on parents night out at Navy Peer.  (I 
really do think she was annoyed we left her in daycare, and 
that was a social comment.)

I also like your idea of continuing to feed her partially 
by mouth.  There's no reason not too, and when she's feeling
better she may not need the g-tube supplementation.  It will
be easier to keep her eating, then to get her back to eating
again.  Over the last 10 months Phil's gone from 6 cans/day 
of supplement down to 1-2, and her weight is holding.  But 
even when she doesn't need that, I'll still keep it as a 
backup (as long as she's willing to pretty much leave it 
alone.)  If nothing else goes down it her colloidal mineral
tonic probably still will, along with some extra water.

I went for bolus feeds instead of hooking her up to a pump 
for hours.  That cut down on the picking.  And besides being 
tied to a pump just didn't fit Miss P's life style. 

I'll be more then glad to clarify anything, or answer any more 
questions you may have on this subject.  This list was 
invaluable to me when I was facing this decisions the beginning
of this year.

Fawna Lockwood , mom of Thom 24, Lara 22, 
Philina 19 (PT6p & Moya Moya Syndrome), 
wife of Douglas, 6 =^..^='s, Bob & Jo the 
African Leopard Tortoises, Dribble the 
Musk Turtle, Paula, Chica & Carmelita the 
llamas. Philina's Pharm Bengal Cattery,
Escondido, California, USA
http://members.aol.com/sorgl/famtoc4.htm
http://www.chromodisorder.org/famtoc4.htm
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