Posted by holly
on 11/19/2008, 7:03 am, in reply to "Re: Distraction surgery"
68.58.169.12
Hey Lori...welcome to the group. Congrats on your new baby boy!!I know it must be a stressful time for you....premie baby and prs. My daughter is now almost eight months old and has prs/csp. She had a tongue lip adhesion done at 18days old for airway problems. She was feeding great...just not gaining weight and having frequent desats/obstruction. I too would suggest getting another opinion. Jaw distraction is major surgery for any infant...much less a premature infant. Some of the breathing issues could be a result of immature lungs too. I would suggest to you that if you decide to go ahead with the distraction, that you make sure that they do a bronchoscopy prior to doing it. They need to make sure that the airway is normal...if he has probs other than just a tongue base obstruction a distraction will not solve the problem. although my daughters case turned out great, i wish i had had a second opinion in the begining too. The feelings on jaw distraction are strong and mixed. My ENT suggested distraction and nothing else...this was the only way to "fix" the problem. The surgeon that i got a second opinion from said that he would never do a distraction on his own child and believed that they are hardly ever necessary....espec. on a newborn. I don't mean to confuse you with any of this...i have been there before...trying to make tough decisions. Just make sure that you get all the info and follow your gut...mommy usually knows best. I will be praying for you and your little one this week. Feel free to email me if you want any specific info on the tongue lip adhesion or for anything else.
holly
--Previous Message--
: hi lori, i would get all medical info u can on
: this matter b4 sugery he may not need 2 have
: this done his jaw will grow naturaly. my son
: had a 3way tube inserted through his nose 2
: help his breathing he feed normally with a
: haberman bottle here in new zealand doctors
: advise against destraction surgery as it can
: stop natural growth therfore needing more
: surgery as time goes by. my son lejihn is 4
: now his jaw has completly grown back he has
: only ever had 1 surgery and that was 2 have
: his palete repaired you would never no he
: had ever had prs
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