[blparent] Question- requesting assistance

[Brandy Wojcik]

Hi, I was tube fed myself, and have tube fed many children. There are a
variety of pump options, and the infinity Light I believe I can look into it
further if this isn't right worked fine. Most of the pumps are ok. Just make
sure they beep when buttons are pressed, and that they can hold a setting so
that when you turn the pump back on that it will be where you left it. If
you are going to syringe feed which doesn't really make since because it
would be called bullis feeding than he will get as much at a time as a
bottle and there for have the same problem than no machine is used. You will
need to be able to sterilize the button and tube, connect the tube to the
machine or syringe, and start it. It is no big deal really. Sometimes
granulated tissue forms around the sight and this can hurt, but they can use
silver nitrate and get it of in the doctor's office, and that tissue is
slimy and not like skin so if he is crying a lot and you feel this then that
is what it is. You will probably want to put some gauze over or around the
button if it tends to be a bit weepy, but this varies from patent to patent.
Please ask any questions you have. I did this to myself for almost 3 years,
and to many children from infant to age 8. Sleepers with snaps up the front
and not zippers or onzees are going to work best to access a tube.

Bran


-----Original Message-----
From: blparent-bounces at nfbnet.org [mailto:blparent-bounces at nfbnet.org] On
Behalf Of Bridgit Pollpeter
Sent: Wednesday, September 26, 2012 5:49 PM
To: blparent at nfbnet.org
Subject: [blparent] Question- requesting assistance

Hello,

Declan is doing well but still struggling with this feeding issue. We are
giving it until the end of the week, but so far, no improvements have
happened. It looks like we're moving towards the G-button. We will begin
consults early next week.

My question is: has anyone dealt with a G-button before, and if so, are
there accessibility issues we should be aware of? We want to go into this
option, if necessary, prepared. Ross and I would appreciate any advice and
suggestions from anyone who has experience with this. We also need to
prepare if, for some reason, there's a visual barrier when dealing with a
G-button. In a blunt nutshell, with two blind parents, will we be able to
independently inject formula into the button? Thanks.

Sincerely,
Bridgit Kuenning-Pollpeter
Read my blog at:
http://blogs.livewellnebraska.com/author/bpollpeter/
 
"History is not what happened; history is what was written down."
The Expected One- Kathleen McGowan


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