Guest guest Posted October 23, 1998 Report Share Posted October 23, 1998 , You mentioned you had some information on choanal atreasia. I would be interested in getting it. had 15 other surgeries done and major heart and also had a lot of facial reconstruction, cleft lip, palate and bone grafting done and was not able to do any oral feeding for quite some time (she also had major swallowing difficulties plus esophageal reflux) so we did not do they opted to wait on her choanal atresia. It is of the hard bony type and I would be interested to find out what it is all about. We go for a Cleft/Lip Palate team reasssessment on Nov. 19 where they will discuss her next operation. She still has to have a palatal extension, and another bone graft for her aleovalar fistula (there was a small hole in the front of her palate, where food would get stuck in and come up into her nose, but they finally covered it with soft tissue but it needs to be permanently repaired, after some growth has happened) but they may decide to do her choanal atresia first. Not that I'm looking forward to hearing about it, but I hope to hear from you soon. Pat Rittgasser Ontario, Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1998 Report Share Posted October 24, 1998 Graeme & Weir wrote: > > > > Pat, > I will get my articles out tonight. Most of them came off the net, so I > can get the addresses from those for you and as for those that didn't I > will scan them and send them to you. Kennedy also had the bony type, > and the repaired it transpalatal. <Up through the palate, then drilled > out the bone> Also, I will give you the name of the doc who performed > the operation, I guess he's got a neat kind of way of doing the stents > that they stay in much better, etc. People came to take pictures of > Kennedy for another hospital when she was " stented " . I will try to get > that info to you ASAP.. > > > -- > Graeme & Weir > gweir@... > http://www.geocities.com/SunsetStrip/Palms/5716 > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1998 Report Share Posted October 24, 1998 Jeanie & Pat, I got this article from the following website: http://www.utmb.edu/oto/Grnds.dir/choanal.htm This is from the grand rounds of the dept. of Otolaryngology, so it is a bit heavy, but you can read around it I " m sure. <If we did, I'm sure you guys can> This explains the whole shebang about choanal atresia, and the treatments/surgeries are also explained in detail. Also, the advantages, disadvantages and complications of each surgery, and the postoperative care. Basically the whole nine yards when they are teaching docs about it. Anyway, we found this article to be the best, but I do have others, and if, after reading this one, you find you would like to see them as well <they are more " dated " than this one>, I will be happy to scan them for you. Jeanie, if you want to impress Dr. e <or just see his jaw drop>, ask him if he would plan to do the surgery " transnasally " , or " transpalatal " . I asked him that 30 seconds after the first time he met me and he just about dropped! By the way, he's one of those doctors who doesn't mind an informed parent! Lots of happy reading, -- Graeme & Weir gweir@... http://www.geocities.com/SunsetStrip/Palms/5716 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1998 Report Share Posted October 25, 1998 Graeme & Weir wrote: > > > > Pat, > I will get my articles out tonight. Most of them came off the net, so I > can get the addresses from those for you and as for those that didn't I > will scan them and send them to you. Kennedy also had the bony type, > and the repaired it transpalatal. <Up through the palate, then drilled > out the bone> Also, I will give you the name of the doc who performed > the operation, I guess he's got a neat kind of way of doing the stents > that they stay in much better, etc. People came to take pictures of > Kennedy for another hospital when she was " stented " . I will try to get > that info to you ASAP.. > > > -- > Graeme & Weir > gweir@... > http://www.geocities.com/SunsetStrip/Palms/5716 > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1998 Report Share Posted October 25, 1998 Hi Everyone, We've been having what I would call rather major problems with MacKenzie in regards to her choanal atresia. Although she has only a unilateral atresia she seems in distress much of the time lately(not really medical distress, but discomfort). I'm unsure whether her problems stem from a never ending cold, aspiration or the regular copious secretions you all mention. Although MacKenzie has always been more " filled up " then our boys were, she has never seemed as congested as most of your children (from what you describe). Are these secretions a big part of CHARGE and do they get worse over time? We see our ENT this week and I'm at the breaking point with MacKenzie gagging, coughing and seemingly labouring to breath 24/7. Have any of your children had a unilateral repair early on? I know that the ENT is against this unless absolutely necessary. I guess a repair won't help anyway if her distress is caused from aspiration, in which case a fundo has been mentioned. Have any of you experienced a similiar problem? It seems like no matter what is found there is no easy fix.I just hope this isn't just the way she's going to be from know on, I don't think I could live like that. Thanks, Jeanie Colp mom to MacKenzie 5 mo.CHARGE, Tyler 7, & Zachary 4 Nova Scotia, Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1998 Report Share Posted October 26, 1998 Jeanie, From what I've read here and experienced, the secretions are a big part of CHARGE. Kennedy goes through phases of being filled up, but since she stopped having her milk as well as her secretions coming out her nose, things have gotten better. Although, the last two weeks haven't been fun, seems she had a cold, got better for a couple days and seems to have another one now. But, I don't know if it's a cold or not now, because I'm always wiping the kid's nose!!?! It is hard for me to hear Kennedy seeming like she's working like mad just to breathe when she's lying there sleeping. If she gets bad, I just keep the saline up there to keep it running out, we do a " shot " up each nostril, and then put her up on our shoulder with a cloth and let it all run out. That seems to help her, but as we know they're all different. At night, I find she has a harder time on her back <which she always rolls to now> if she seems to be struggling particularly bad at night, I MAKE her go up on her side with a roll behind her. It doesn't always work, because she's strong enough to let me know now what I can do with the roll, but it does seem to help when she's on her side. Hopefully will be able to help you next week, ask him about the saline thing, see what he thinks. He told me it does work, as long as the side isn't blocked. So, it might work up one side for MacKenzie. Hope I helped! -- Graeme & Weir gweir@... http://www.geocities.com/SunsetStrip/Palms/5716 Quote Link to comment Share on other sites More sharing options...
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