Posted by Krista on 3/24/2008, 12:01 pm, in reply to "Re: trach tube and feeding tube is gone (thank God), but my daughter's holes are still opened"
68.88.99.200
Ok, we went for our appointment on the 21st. Her pulm Dr said chances of the air pocket are very slim and if you have a Dr. who does this often the chances of this happening are slim to none. I am in Texas and deal with a wonderful childrens hospital who has delt with many cases of pierre robin. We go next Tuesday to talk to the surgeon and schedule surgery. This is the same surgeon who did her trach and gbutton. Emma's stoma from her trach is almost closed and just has a slight opening she got her trach at about 2mo and it was removed a month before her second birthday. Mindy where in Texas are you? Wonder if we deal with the same hospitals and Dr.'s
Krista mom to Brianna 7 1/2 no prob
and Emma 2 1/2 former trach, gbutton, ear tubes, pallet repaired, reflux and just found out that she does not have sticklers!!
--Previous Message--
: I am totally surprised that your dr. didn't
: close the hole after a few months of the
: trach removal. My son is now 5 1/2 and had
: his taken out when he was 15 mo. old. His
: didn't close and about 2 mo. after our dr.
: said it was time to close it up. He even
: removed some of the sunken excess skin
: around the hole to make the area blend and
: be smoother with his neck. I would be going
: crazy like you trying to keep the area
: sanitary. My son's touch up surgery only
: took 30 min. and the stitches were
: disolvable.
: His scar is almost completely faded and you
: would never know he had a trach at all.
: He had no other syndromes other than the
: small jaw back then. Now he is in prek and
: devoloping normally.
: I would really get a second opinion and see
: what another dr. says...its very minor
: surgery. Two years is an extremely long
: time to have an open airway.
:
: --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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