Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Hi everyone. We saw Meagan's ENT last Tuesday. The news was alarming. Her ENT has been " in the business " for 33 years, and he says he has never seen such a severe case of sleep apnea in his life. He says that in pediatrics, 4-5 apnea episodes an hour is considered severe sleep apnea. Meagan has 70 apnea episodes an hour! He says the cause of her apnea is due to her enlarged tonsils and shortened lower jaw. Since her tongue doesn't have much room to fall back when sleeping, and her tonsils take up quite a bit of space, she basically has no airway while sleeping. So the answer is to remove her tonsils to see if it will correct the apnea. Once the tonsils are removed and she has healed, we will be sent off for another sleep study. If for some reason she fails this sleep study, a trache is the next step (the trache would be worn for a couple of years before reconstructive surgery to her lower jaw could be done). I just about passed out over this! But, before I send most of you into panic mode, you must know that the success rate on the tonsillectomy is in the 80-90% range. In fact, since she was born with the shortened jaw, and has never had any apnea issues in the past, it actually increases are chances of a successful surgery! Another check in our column is she has been on a 4 day steroid to shrink the tonsils. And, now that they have shrunk (temporarily), her vomiting and apnea at night has diminished significantly. (Meagan would vomit in the middle of the night, every night, because she would try so hard to move air that it would create a negative suction ultimately pulling all the food from her tummy) Anyhow, we just got a call from the surgeon today letting us know that her surgery date will be Thursday, April 5th. We will let you know how things go. Her recovery rate will depend on her ability to breathe on her own. Her tracheomalacia and laryngomalacia may prolong her stay. But on the positive side, we don't have to wait for her to take food by mouth since she has the button for feeds! So, we're looking anywhere from 1-10 days. On a much more positive note, Meagan received her glasses last week. She looks so darn cute in them! Attached is a photo of the kids. had there pictures done for me for our tenth anniversary...yes ten years!! To my CHARGE family, I'm aware the photo does not show up on our list serve. I will create a link for you all to view the pictures. , mommy to Meagan (CHaRgE) and 2 year old twins, and big brother 4 years, married to the best daddy in the world for 10 years! The mention of my child's name might make me cry. Not mentioning my child's name will break my heart. Unknown Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Holy Moley!!! That was quite a shock to read! I'm sure that the tonsillectomy will be a huge success. Are they taking out her adenoids too? Anyway, all the best for the 5th, really, it will be a remarkable improvement and hopefully no problems with extubating and a speedy recovery. good luck, (5yo CHaRGE) Aiden (2yo) Sydney Australia > > > > > Hi everyone. We saw Meagan's ENT last Tuesday. The news was alarming. Her > ENT has been " in the business " for 33 years, and he says he has never seen > such a severe case of sleep apnea in his life. He says that in pediatrics, > 4-5 apnea episodes an hour is considered severe sleep apnea. Meagan has 70 > apnea episodes an hour! He says the cause of her apnea is due to her > enlarged tonsils and shortened lower jaw. Since her tongue doesn't have much > room to fall back when sleeping, and her tonsils take up quite a bit of > space, she basically has no airway while sleeping. So the answer is to > remove her tonsils to see if it will correct the apnea. Once the tonsils are > removed and she has healed, we will be sent off for another sleep study. If > for some reason she fails this sleep study, a trache is the next step (the > trache would be worn for a couple of years before reconstructive surgery to > her lower jaw could be done). I just about passed out over this! But, before > I send most of you into panic mode, you must know that the success rate on > the tonsillectomy is in the 80-90% range. In fact, since she was born with > the shortened jaw, and has never had any apnea issues in the past, it > actually increases are chances of a successful surgery! Another check in our > column is she has been on a 4 day steroid to shrink the tonsils. And, now > that they have shrunk (temporarily), her vomiting and apnea at night has > diminished significantly. (Meagan would vomit in the middle of the night, > every night, because she would try so hard to move air that it would create > a negative suction ultimately pulling all the food from her tummy) Anyhow, > we just got a call from the surgeon today letting us know that her surgery > date will be Thursday, April 5th. We will let you know how things go. Her > recovery rate will depend on her ability to breathe on her own. Her > tracheomalacia and laryngomalacia may prolong her stay. But on the positive > side, we don't have to wait for her to take food by mouth since she has the > button for feeds! So, we're looking anywhere from 1-10 days. > > On a much more positive note, Meagan received her glasses last week. She > looks so darn cute in them! Attached is a photo of the kids. had there > pictures done for me for our tenth anniversary...yes ten years!! > > To my CHARGE family, I'm aware the photo does not show up on our list serve. > I will create a link for you all to view the pictures. > > , mommy to Meagan (CHaRgE) and 2 year old twins, and big brother > 4 years, married to the best daddy in the world for 10 years! > > The mention of my child's name might make me cry. Not mentioning my child's name will break my heart. Unknown > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 We'll be thinking of Meagan on the 5th - 70 an hour, how scary!!! I hope the operation helps her a lot. www.chargesyndrome.info > > Holy Moley!!! That was quite a shock to read! I'm sure that the > tonsillectomy will be a huge success. Are they taking out her > adenoids too? Anyway, all the best for the 5th, really, it will be a > remarkable improvement and hopefully no problems with extubating and > a speedy recovery. > good luck, > > (5yo CHaRGE) Aiden (2yo) > Sydney Australia > > > > > > > > > > > > Hi everyone. We saw Meagan's ENT last Tuesday. The news was > alarming. Her > > ENT has been " in the business " for 33 years, and he says he has > never seen > > such a severe case of sleep apnea in his life. He says that in > pediatrics, > > 4-5 apnea episodes an hour is considered severe sleep apnea. Meagan > has 70 > > apnea episodes an hour! He says the cause of her apnea is due to her > > enlarged tonsils and shortened lower jaw. Since her tongue doesn't > have much > > room to fall back when sleeping, and her tonsils take up quite a > bit of > > space, she basically has no airway while sleeping. So the answer is > to > > remove her tonsils to see if it will correct the apnea. Once the > tonsils are > > removed and she has healed, we will be sent off for another sleep > study. If > > for some reason she fails this sleep study, a trache is the next > step (the > > trache would be worn for a couple of years before reconstructive > surgery to > > her lower jaw could be done). I just about passed out over this! > But, before > > I send most of you into panic mode, you must know that the success > rate on > > the tonsillectomy is in the 80-90% range. In fact, since she was > born with > > the shortened jaw, and has never had any apnea issues in the past, > it > > actually increases are chances of a successful surgery! Another > check in our > > column is she has been on a 4 day steroid to shrink the tonsils. > And, now > > that they have shrunk (temporarily), her vomiting and apnea at > night has > > diminished significantly. (Meagan would vomit in the middle of the > night, > > every night, because she would try so hard to move air that it > would create > > a negative suction ultimately pulling all the food from her tummy) > Anyhow, > > we just got a call from the surgeon today letting us know that her > surgery > > date will be Thursday, April 5th. We will let you know how things > go. Her > > recovery rate will depend on her ability to breathe on her own. Her > > tracheomalacia and laryngomalacia may prolong her stay. But on the > positive > > side, we don't have to wait for her to take food by mouth since she > has the > > button for feeds! So, we're looking anywhere from 1-10 days. > > > > On a much more positive note, Meagan received her glasses last > week. She > > looks so darn cute in them! Attached is a photo of the kids. > had there > > pictures done for me for our tenth anniversary...yes ten years!! > > > > To my CHARGE family, I'm aware the photo does not show up on our > list serve. > > I will create a link for you all to view the pictures. > > > > , mommy to Meagan (CHaRgE) and 2 year old twins, and > big brother > > 4 years, married to the best daddy in the world for 10 years! > > > > The mention of my child's name might make me cry. Not mentioning my > child's name will break my heart. Unknown > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 , as crazy as it sounds, I don't know if the adenoids are coming out. I was told a while back that it one comes out, typically the other does too. We'll see... , mommy to Meagan (CHaRgE) and 2 year old twins, and big brother 4 years, married to the best daddy in the world for 10 years! The mention of my child's name might make me cry. Not mentioning my child's name will break my heart. Unknown Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 , They arnt going to take my Adnoids out either...But the doctor said there is some other thing in your nose that they are going to make smaller or something.... And thats good you dont have to wait too long for surgery.. That sounds really quick actually... i went to the doctors at end of feb and am going in in about 3 weeks... I did ask for the easter holidays though... I didnt know the typical was 4-5 times an hour, mine was around 30... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 - Ethan is having his tonsils removed this Friday (assuming he gets clearance from the pulmonologist tomorrow!). He does have a trach, but we are taking his tonsils out proactively because we know he will have to get them eventually. We also hope this will help with his swallowing. Good luck with your procedure. I will let you know how his recovery goes. He has been through a lot of surgeries but his ENT thinks this will be a painful recovery for him. Jody - mom to Ethan (ChARGE) and --------------------------------- Don't be flakey. Get Yahoo! Mail for Mobile and always stay connected to friends. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 , This seems so hard. But it also seems there's such a positive when it's all said and done. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 hugs to all now > > - Ethan is having his tonsils removed this Friday (assuming he > gets clearance from the pulmonologist tomorrow!). He does have a trach, but > we are taking his tonsils out proactively because we know he will have to > get them eventually. We also hope this will help with his swallowing. Good > luck with your procedure. I will let you know how his recovery goes. He has > been through a lot of surgeries but his ENT thinks this will be a painful > recovery for him. > > > > Jody - mom to Ethan (ChARGE) and > > --------------------------------- > Don't be flakey. Get Yahoo! Mail for Mobile and > always stay connected to friends. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2007 Report Share Posted March 22, 2007 Dear - It sounds like you guys are heading towards the right treatment for your precious girl! How wonderful that both the vomiting and the apnea are down with the decreased swelling of the tonsils! Congratulations on your tenth anniversary - I look forward to being able to see the photos ;o) I will keep Meagan and your family in my thoughts and my heart ... the big date is only two weeks away..... take good care- yuka Meagan's tonsillectomy Hi everyone. We saw Meagan's ENT last Tuesday. The news was alarming. Her ENT has been " in the business " for 33 years, and he says he has never seen such a severe case of sleep apnea in his life. He says that in pediatrics, 4-5 apnea episodes an hour is considered severe sleep apnea. Meagan has 70 apnea episodes an hour! He says the cause of her apnea is due to her enlarged tonsils and shortened lower jaw. Since her tongue doesn't have much room to fall back when sleeping, and her tonsils take up quite a bit of space, she basically has no airway while sleeping. So the answer is to remove her tonsils to see if it will correct the apnea. Once the tonsils are removed and she has healed, we will be sent off for another sleep study. If for some reason she fails this sleep study, a trache is the next step (the trache would be worn for a couple of years before reconstructive surgery to her lower jaw could be done). I just about passed out over this! But, before I send most of you into panic mode, you must know that the success rate on the tonsillectomy is in the 80-90% range. In fact, since she was born with the shortened jaw, and has never had any apnea issues in the past, it actually increases are chances of a successful surgery! Another check in our column is she has been on a 4 day steroid to shrink the tonsils. And, now that they have shrunk (temporarily), her vomiting and apnea at night has diminished significantly. (Meagan would vomit in the middle of the night, every night, because she would try so hard to move air that it would create a negative suction ultimately pulling all the food from her tummy) Anyhow, we just got a call from the surgeon today letting us know that her surgery date will be Thursday, April 5th. We will let you know how things go. Her recovery rate will depend on her ability to breathe on her own. Her tracheomalacia and laryngomalacia may prolong her stay. But on the positive side, we don't have to wait for her to take food by mouth since she has the button for feeds! So, we're looking anywhere from 1-10 days. On a much more positive note, Meagan received her glasses last week. She looks so darn cute in them! Attached is a photo of the kids. had there pictures done for me for our tenth anniversary...yes ten years!! To my CHARGE family, I'm aware the photo does not show up on our list serve. I will create a link for you all to view the pictures. , mommy to Meagan (CHaRgE) and 2 year old twins, and big brother 4 years, married to the best daddy in the world for 10 years! The mention of my child's name might make me cry. Not mentioning my child's name will break my heart. Unknown Quote Link to comment Share on other sites More sharing options...
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