Posted by M on 3/8/2008, 7:12 am, 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
Hi Krista, God is definitely great. Please let me know what happens on the 21st.
--Previous Message--
: Emma only had her trach for 2 years. I know I
: do not want to go back down that road again
: so I will definetly be asking what the
: possibilities of that happening are before
: we have the surgery. We were told when they
: took out her trach that they would give the
: stoma about a year to close on its own than
: they would go in and do what they needed to
: in order to close it and not leave a big
: scar. I will tell you what I find out come
: the 21st of this month. We did find out
: yesterday that they had thought Emma had
: sticklers syndrome but after getting her
: eyes checked she does not have the type that
: affect the eyes. Priase God for that!!!
:
:
: Krista
: Mom to Brianna 7 no problems
: Emma trach at 2mo, decannulated may07, ear
: tubes, gbutton at 1mo, removal april08,
: pallet repaired march 06
: --Previous Message--
: Hi Krista, I'm in New York. Like Karin said,
: no two doctors are alike. When they took
: out the Trach and feeding tube, I was told
: by the doctors, that the holes will close on
: its own. And its been two years now and it
: hasn't. I will definitely try and get a
: second opinion about her stomas being
: closed. It's just when the ENT told me
: about the possible problems that can arise
: if they close the stoma, I got real scared.
: She had the trach for approximately 6 years,
: and although it saved her life by limiting
: the amounts of aspiration pneumonia she used
: to have, I am not trying to go back there.
: I will definitely make another appointment
: with ENT. I hope everything goes well with
: your daughter. Keep me informed.
:
: --Previous Message--
: My daughter had her trach removed a month
: before her 2nd birthday. She will have her
: stoma closed in April they have not
: mentioned the above problems to us. She
: will also have her gtube removed and the
: stoma closed at the same time. I have an
: appointment at the end of the month with her
: pulmonoligist so I will be sure to ask about
: this. We are in Texas where are you>
:
: --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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