Posted by krista martin
on 10/14/2009, 10:29 am, in reply to "Re: Surgery"
207.54.197.41
Emma's jaw is not growing out. She is 4yrs old and the lower jax is very far back.. Her pulmonoligist and the surgeon who did her pallet repair referred us to a pediatric plastic surgeon who specializes in the jaw distration he studied under the Dr who invented it. At the time Emma was born and transferred to the Childrens hospital closest to us the only thing they did was trach or position pierre robin babies. They didn't do TLA or the distraction surgery. So Emma was trached. She got the trach out at 2yrs old after the bronchoscopy showed that her air way had opened up. They say if she doesn't have this that eventually she will need a trach again since her jaw is not growing with the rest of her body. She will have a sleep study done soon and that will determine how fast we set up surgery. All three of these Dr's agree that it needs to be done. I was just concerned about her eating during this time as she can not afford to loose any weight. I would also like to know what to expect from a parents point of view regarding the surgery.
--Previous Message--
:
: Hey Krista...
: Why are they saying that Emma needs to have
: jaw distraction now?? Did she have a bad
: sleep study or something else to warrant
: this?? Is this her original plastic
: surgeon?? There are other ways than surgery
: to treat sleep apnea if that is the problem,
: and I might would look into that before
: agreeing to such major surgery. I will tell
: you that my friend has boy/girl twins who
: will be four next month. They were born
: healthy and have had no problems. They both
: weigh around 28 pounds and have always been
: on the small side. My daughter is eighteen
: months old and weighs more than them. My
: point being that just because she doesn't
: weigh that much doesn't necessarily mean she
: is alone in that department. If she does not
: have any eating problems now, i don't see
: where surgery would make things worse...just
: would probably have some issues related to
: pain/surgery for a few weeks. On the other
: hand, if she is having problems with eating
: now, i wouldn't say that surgery would fix
: that this far into the game. I would just
: make sure why they want to distract her jaw
: and make sure that it is really necessary
: and that there are no other options that you
: could try first if her problems weren't that
: severe. Anyways...keep us posted.
: Holly
: --Previous Message--
: I have not posted in a long time but this
: board helped me so much when Emma was first
: born 4 yrs ago. We were sent to see a
: surgeon last week who says that Emma needs
: the jaw distraction surgery. Emma had a
: trach for the first two years of her life
: and we thought once that was gone we were
: good....what a surprise when we were told
: she need the jaw surgery. Can anyone tell
: me what to expect baised on an older child
: not infant having to have this surgery.
: Like I said Emma is 4 and just hit the
: bottom 10th percential for weight she is
: only 25lbs and we fight for every pound she
: has pediasure 3 times a day via mouth along
: with 3 meals and several snacks thru out the
: day. I am really scared about the upcoming
: procedure and how it might effect her
: weight.
:
: Krista
: mom to Emma 4yrs old former gtube and trach,
: ear tubes pallet repair, stoma repairs and
: possible sticklers syndrome and one of the
: most amazing little girls I know
:
:
:
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