Posted by Marsha on 3/6/2008, 3:08 pm, in reply to "Re: trach tube and feeding tube is gone (thank God), but my daughter's holes are still opened"
69.114.222.188
Thank you Karin. I will definitely google decannulation. It seems like just when you think you've overcome one hurdle, here comes another one waiting for you.
--Previous Message--
: Hey, Marsha. I've been reading hospital web
: sites about their procedures for
: decannulation, and almost all of them
: discuss a potential surgery to close stomas
: that will not close on their own. (Go to
: google and type "decannulation".)
: Given the amount of time, and the impact
: this issue is having on Diamond, perhaps a
: second opinion is in order. One thing we've
: all learned from this website is that no two
: doctors are alike, and what one doctor deems
: a huge risk, another thinks is no big deal.
: (And then, somehow, we parents have to
: decide!) Best of luck.
:
: --Previous Message--
: Good Afternoon everyone, I am new to this
: organization, but find it so helpful. I
: wish I knew about this long ago, when my
: daughter and I were really going through it.
: Anyway, thanks for the opportunity to
: share. My daughter had her trache tube, and
: feeding tube removed for approximately two
: years now and the holes are still opened.
: When they removed the trach tube, I know
: they gave us specific instructions regarding
: covering the hole when speaking, or
: coughing, etc., but no matter how much I
: keep reminding my daughter to do so, she
: just ignores me, and it is frustrating me so
: much. We are constantly using bandaids (I
: swear we are probably the hugest financial
: supporters of the bandaid company), and
: whenever she forgets to put them on (which
: is daily), mucus is still protruding through
: the hole. We went to the ENT a couple
: months ago, and they said not to worry about
: it because if they surgically close it up,
: there is a chance that air can create like a
: pocket where the hole was and more
: complications, such as putting back the
: trache tube can arise. We have come such a
: long way, but I keep telling Diamond (my
: daughter), that now she has to do her part.
: I guess she has been used to approximately 7
: years of nurses & mommy basically doing
: everything for her that she got lazy. Can
: anyone give me some advice? Its frustrating
: and at times I feel sad/sorry for her
: because she told me a few months ago, that
: some of the kids in her school sometimes
: call her "holey neck." I know how
: cruel kids can be, and I keep trying to
: reinforce to her that she has to cover her
: neck when she talks and etc. I even bought
: her cute little pocketbooks, mirrors, wipes,
: cute little cartoon bandaids, but she pays
: it no mind. Please help, I am literally
: going crazy.
:
:
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