Discussion with the Surgery Nurse Practitioner (NP) came to
the conclusion that Little Man needed to be seen- because of the granulation
tissue, the continued pain/aversions, and now this belly button rash (which
could potentially be indicative of infection/abscess). She decided that
it would be better to wait until his surgeon could be present as well, and help
evaluate what may be going on with his tube- why he has so much
drainage/seeping, granulation tissue, sensitivity, pain, aversions, etc... We discussed
that changing the tube (different brand, he has an AMT Mini One right now and
there is another one that is similar and will "fit" in the same
"hole" called a Mic-key button). So, that afternoon we
went in and they checked his site and decided he needed a change -- we have
nothing to lose and everything to gain at this point. Typically the tube
is changed at the 6 week mark standard anyway- so we are just shy of that and
he needs a change. We are hoping this is the ticket for his body
to accept the tube better, so he can be less averse to it and accept it more -
and then accept feedings....
They noted that it should not still be draining/oozing as
much as it still is, now 6 weeks post surgery. The surgeon feels that it
could very well be likely that his body is simply rejecting the material of the
tube, so a change in brand will hopefully change that. We shall
see. I am hopeful because it already looks better!! He wasn't
nearly as upset, once we were done- he was good to go and giggles on the drive
home. He had a few tantrums that evening and has some red-rosy cheeks and
then I remembered....I saw her putting lubricant on a papertowel before she
switched the tubes out....it is standard to use a little lubricant to help the
tube slide into place and I don't know why I didn't think of it before but he
has had previous issues from lubricant!! I think I will have to have them
add Lubricant to his allergies!
Speaking of AMT Mini-One. A short time after Little
Man got his tube, I sent away for him to get a "Mini Buddy", similar
to a "Tubie Friend".
Mini-Buddy is from AMT Mini-One
and
Tubie Friend is from
Mic-key button. They get donated stuffed animals and give them
"surgery" for them to have the medical appliances our little one's
have. It is a visual aid, a teaching tool, a comfort item, and a friend.
And, most of all for us, it has helped Little Man to be more familiar
with his tube.
These are great groups, if you know someone with a feeding
tube or getting one- contact them for a buddy!
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