Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 , I couldn't tell you about the suctioning, it has just been too long ago. Because Patty has a submucus cleft she could never get her adenoids out, but at around age 4(?) was the last time for opening her atresia and she had her tonsils out at the same time. Patty too never can tell if she has an ear infection, even to this day. The only way we know is she says " what " more than usual and her ears have a unique odor. I feel bad he possibly has to go through it, for both of you. I understand your saying he can't catch a break but you know, he is one wonderful young man. Let us know how things turn out. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 did you have to suction her and all that jazz? Re: nasal blockage > erika had her adnoids out while repairin the coanal atresia. the adnoids > were enlarged. it was done at the same time so she did not seem to notice. > it did help with the breathing, unfortunately the nose is closing agsin, so > it is more difficult to,breath. erika is now 6, we arew having a > bronchocspoy again in a couple weeks, so we will see if there us anymore > blockedge, she has had the coanal atrsia opened 6X > cathie erikas mom > > > 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, > July > 20-22, 2001. Information is available at our website > www.chargesyndrome.org or by calling 1-. > > > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 thanks!!! that is ssuch a relief to hear--don't know of course what dr. tom would do, but at least I know it may be an option. maria nasal blockage > > > ok all you charge experts out there--I have some questions for you. I took tim to the ent today for a hearing screening and general check up, and to find out about some inner ear issues and and the speech therapist thought his adnoids may be enlarged, but... he has fluid in both ears, the rest of us got a cold over vacation--he gets ear infections, so, no hearing test. And the ent had me set up a cat scan he thinks there may be a nasal blockage again--I thought we may get away with this one--he had his last surgery for that at 7 weeks. > > so we go back to philly the 13th--he has camp next week and I didn't want him to miss that. have the cat scan, and then call in three days and he will call us back with the results, then go back mid-sept. for hearing issues. > > so, here is my biggest ? if he needs the surgery for the nasal blockage do they put stints in and do we have to suction them every 2-3 hours like when he was a baby? I just don't want to put him through that again, especially since he can remember it now and will be alot harder to hold down to suction--and believe me, it would be a fight!! > > also, if it's the adnoids has anyone been through that? > > thanks in advance for any responses--i feel like crying--this kid never gets a break, he never even told us his ears hurt--never does. > > maria mom to timmy almost 6 ChARGE, keegan 3, and laim alomst 10 months, wife to pat > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 Bonnie, thanks I will. how are things going getting ready for college? is Patty set for school too? I just got a letter yesterday saying timmy was set for kindergarten--It's gonna be a rough fall for me. timmy in kindergarten, keegan in pre-k and liam will turn 1--my babies are growing up too fast!!! maria Re: nasal blockage > , > > I couldn't tell you about the suctioning, it has just been too long ago. > Because Patty has a submucus cleft she could never get her adenoids out, but > at around age 4(?) was the last time for opening her atresia and she had her > tonsils out at the same time. > Patty too never can tell if she has an ear infection, even to this > day. The only way we know is she says " what " more than usual and her ears > have a unique odor. > I feel bad he possibly has to go through it, for both of you. I > understand your saying he can't catch a break but you know, he is one > wonderful young man. Let us know how things turn out. > > Bonnie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 thanks sherry--one day at a time at this point. maria nasal blockage > > > > ok all you charge experts out there--I have some questions for you. I > took tim to the ent today for a hearing screening and general check up, and > to find out about some inner ear issues and and the speech therapist thought > his adnoids may be enlarged, but... he has fluid in both ears, the rest of > us got a cold over vacation--he gets ear infections, so, no hearing test. > And the ent had me set up a cat scan he thinks there may be a nasal blockage > again--I thought we may get away with this one--he had his last surgery for > that at 7 weeks. > > > > so we go back to philly the 13th--he has camp next week and I didn't want > him to miss that. have the cat scan, and then call in three days and he > will call us back with the results, then go back mid-sept. for hearing > issues. > > > > so, here is my biggest ? if he needs the surgery for the nasal blockage > do they put stints in and do we have to suction them every 2-3 hours like > when he was a baby? I just don't want to put him through that again, > especially since he can remember it now and will be alot harder to hold down > to suction--and believe me, it would be a fight!! > > > > also, if it's the adnoids has anyone been through that? > > > > thanks in advance for any responses--i feel like crying--this kid never > gets a break, he never even told us his ears hurt--never does. > > > > maria mom to timmy almost 6 ChARGE, keegan 3, and laim alomst 10 months, > wife to pat > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 hope all keeps going well for kim, lisa just said they did kennedy's by laser and not stents--we can hope. Re: nasal blockage > > , > I would be interested in the answer regarding stents also as Kim has another nasal blockage. Like you I can't imagine having to suction her at this age. Regarding adnoids, Kim's ENT says they definately will come out along with the tonsils, probably sooner than later, but in Kim's case we could be dealing with a swallowing issue and possibly having to relearn how to swallow. Presently they don't interfere with her breathing so we're leaving well enough alone for right now. Can't wait to see if anyone knows about the stents. > Lydia mom to chrgr Kim 15, Alia 15, 17, 20 > > maria halloran wrote: ok all you charge experts out there--I have some questions for you. I took tim to the ent today for a hearing screening and general check up, and to find out about some inner ear issues and and the speech therapist thought his adnoids may be enlarged, but... he has fluid in both ears, the rest of us got a cold over vacation--he gets ear infections, so, no hearing test. And the ent had me set up a cat scan he thinks there may be a nasal blockage again--I thought we may get away with this one--he had his last surgery for that at 7 weeks. > > so we go back to philly the 13th--he has camp next week and I didn't want him to miss that. have the cat scan, and then call in three days and he will call us back with the results, then go back mid-sept. for hearing issues. > > so, here is my biggest ? if he needs the surgery for the nasal blockage do they put stints in and do we have to suction them every 2-3 hours like when he was a baby? I just don't want to put him through that again, especially since he can remember it now and will be alot harder to hold down to suction--and believe me, it would be a fight!! > > also, if it's the adnoids has anyone been through that? > > thanks in advance for any responses--i feel like crying--this kid never gets a break, he never even told us his ears hurt--never does. > > maria mom to timmy almost 6 ChARGE, keegan 3, and laim alomst 10 months, wife to pat > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 hi maria, erika just turned 6, she has had her nose opened 6 times! the first whens he was first born, 4x with stints, once thru the palate, it has pretty much closed again, we are being brocnhed on the 14th and he will diliate it again, but we may wait with more stining, they are talking about longer stiting maybe 6 months vs the 6 weeks, i have heard from others onthe list this is usually what does it., erikas ent wants to wait until she is bigger, he said the bigger the bone the better chance it will stay open, i HATE this too, she is aware and it was by far the worst thing she has had doen (except the open hear) and erika has had 28 operations. erika is trached but they say the nose does not have to ben open to decannulate. she also has had the adnoids and tonsils removed, they were very large. any advice you hear would also be appreciated, did you say you got o philly? we have been to dr. cotton and we live in NY so we are now using NYU. cathie, erikas mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 hi guys its Ellie once again resurfacing after another tough go round with the brilliant lawyer I hired to finish this divorce mess.......I digress Nicky is now 9 but has had roughly 26 surgeries to " scrape the barnicles off his hull " as we lovingly put it. I hate when you're a regular and the day surgery nurses all know you. But thats what happens with you are blessed with a charger. At first Nicky had to wait for his first surgery until he weighed atleast 5 pounds. since he was a preemie that took 3 months of " growing us a baby " inpatient at an excellent hospital in providence ri just 45 minutes from our home. I remember the day he was transferred to Boston's Children's for his first surgery--a transpalital dilation. His first orl was a tiny woman who thought I knew nothing and tried to explain in patronizingly anger provoking terms how she would " just trach " him if his breathing got real bad. To me that was a huge just!!! Since I'm not stupid and the yahoo group had some information that really helped, I knew that his speech would have been delayed more by " just traching " . thank god she married and left us!! her replacement knows parents sometimes know more than the docs and treated us as peers. we've been through stints, deep suctioning (which really sucks when you have to do it on a helpless newborn--and no pun intended), having to ream a new a****** for a stupid intern who only used the pain medication TYLENOL on a screaming toddler who had the " royal treatment " (dilatation, tubes, tonsils, and adnoids all done at once). This same doc told me kids dont feel the same level of pain as adults. I asked him to bend over so I could do the same royal treatment on him exception through his newly reamed area. He got my message and the 3 other sets of parents in this 4 bed room applauded. You do what you have to to protect your child and get the appropriate care. As it turned out this particular surgery was suppose to be a 23 hour stay to make sure he was eating before they released him, turned into 4 days thanks to the stupidity of those interns being taught babies and toddlers dont feel pain like adults!! Hang in and god bless... love and kisses Ellie childless mom to Becca and Nicky who both need me more than ever and a mom who needs them even worse! --- Lydia Rivers wrote: > > Will be thinking of you guys on the 13th. Good > luck! > Lydia > > maria halloran wrote: hope > all keeps going well for kim, lisa just said they > did kennedy's by > laser and not stents--we can hope. > > Re: nasal blockage > > > > > > , > > I would be interested in the answer regarding > stents also as Kim has > another nasal blockage. Like you I can't imagine > having to suction her at > this age. Regarding adnoids, Kim's ENT says they > definately will come out > along with the tonsils, probably sooner than later, > but in Kim's case we > could be dealing with a swallowing issue and > possibly having to relearn how > to swallow. Presently they don't interfere with her > breathing so we're > leaving well enough alone for right now. Can't wait > to see if anyone knows > about the stents. > > Lydia mom to chrgr Kim 15, Alia 15, 17, > 20 > > > > maria halloran wrote: ok > all you charge experts out > there--I have some questions for you. I took tim to > the ent today for a > hearing screening and general check up, and to find > out about some inner ear > issues and and the speech therapist thought his > adnoids may be enlarged, > but... he has fluid in both ears, the rest of us got > a cold over > vacation--he gets ear infections, so, no hearing > test. And the ent had me > set up a cat scan he thinks there may be a nasal > blockage again--I thought > we may get away with this one--he had his last > surgery for that at 7 weeks. > > > > so we go back to philly the 13th--he has camp next > week and I didn't want > him to miss that. have the cat scan, and then call > in three days and he > will call us back with the results, then go back > mid-sept. for hearing > issues. > > > > so, here is my biggest ? if he needs the surgery > for the nasal blockage > do they put stints in and do we have to suction them > every 2-3 hours like > when he was a baby? I just don't want to put him > through that again, > especially since he can remember it now and will be > alot harder to hold down > to suction--and believe me, it would be a fight!! > > > > also, if it's the adnoids has anyone been through > that? > > > > thanks in advance for any responses--i feel like > crying--this kid never > gets a break, he never even told us his ears > hurt--never does. > > > > maria mom to timmy almost 6 ChARGE, keegan 3, and > laim alomst 10 months, > wife to pat > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > 5th International CHARGE Syndrome Conference, > Indianapolis, Indiana, > > July > > 20-22, 2001. Information is available at our > website > > www.chargesyndrome.org or by calling > 1-. > > > > > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the > newsletter) > > please contact marion@... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > > > Quote Link to comment Share on other sites More sharing options...
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