Posted by Amanda on 3/19/2008, 9:48 pm, in reply to "Re: trach tube and feeding tube is gone (thank God), but my daughter's holes are still opened"
71.11.199.104
Hi,
I am a SLP and I know that with many of my female patients, especially adult patients with stomas that it can feel unflattering or even embarrassing. I can only imagine how brave and strong your little girl is to have overcome so many medical obstacles already and teasing at school shouldn't have to be one more! One thing you might want to look at is a fashionable stoma cover. http://bowsgallery.com/ is one example, many look like necklaces and even if you decide not to buy one they might give you an idea of one that you and your daughter may be able to design and make together. Hope this helps!
--Previous Message--
: Thank you Stephanie. I am so glad I gave you
: a little hope. My daughter's G-tube was
: placed about a month and a half after birth,
: I was such an emotional wreck because on one
: hand, this was my first child and you have
: hopes and dreams that your child will be
: born healthy, with no kind of complications.
: Then on the otherhand, you're satisfied
: that your child has a chance to gain
: nutrition any way possible. When she was
: born, she had poor suck and swallow reflex.
: She refused to take anything by mouth. So
: the G-tube saved her life. The thing is to
: never give up. If you believe in the
: creator, keep praying and try to imagine, or
: visualize your son without the G-tube, and
: eating everything by mouth. I used to
: always get discouraged because it seemed
: like when I had my daughter, all my friends
: and people I knew were having children and
: their child were eating at social functions
: with no problems, and I used to get
: discouraged alot. One day I snapped out of
: my "discouragement syndrome" and
: realized that the health of my daughter
: depended on me. I had to start sending out
: positive and self-healing energy towards
: her, and she is my miracle baby. There is
: hope Stephanie. We have the power to heal
: our children. We have to tap into that
: maternal energy, and start sending out the
: healing rays towards our babies. I hope
: everything works well with your son....he'll
: be rid of the G-tube soon, you'll see.
:
: --Previous Message--
: Congratulations to your little girl that the
: tubes are out. My son (23 months) doesn't
: have a trach, but does have the g-tube. I
: get SO discouraged that he will never be rid
: of it, but reading about your daughter gives
: me a bit of hope. Sorry I can not give any
: advise regarding the closing of the holes,
: but I just wanted to let you know that
: hearing that your daughter does not rely on
: the g-tube made my day :0)
:
: Stephanie
:
: --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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