Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 we went to Dr Cotton from New York, Our insurance covered the Dr's visit but not the travel,hotel, etc. I would call Dr Cottons office to see if they p articipate w/your insurance and also call your insurance company. Some insurance companies cover travl, my did not. They do have a ROnald McDOnald house there that is pretty nice. We made the trip 3 or 4 times. However, Dr Cotton was not able to get my daughter's trach out. There are not gaurantees, but he is the best! He was straight with us, did her coanal atresia repair again, and then said his reconstructive surgery would not help w/her particual issues. There are some companies out there that pay for flights, i have a list somehwere. Miracle Flights is one. We drove, it took us 11 hours but we wanted a car, and didn't know how long we would be there and able to come home. Dr COtton sees a lot of CHARG kids. Good luck Cathie, mom to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 Whitney recently underwent the tracheal reconstruction surgery, where they remove cartlage from her rib, and reconstruct her airway with it. The surgery went well, however, she still can't breath well without the trach. Her ENT here in Arizona is now going to refer us to Dr. Cotton's clinch in Ohio. He thinks she it two complicated. Has any of you had any experience with him? Is this something that is usually covered by insurance? If so, what about the flight costs? We want to get this trach out soooo bad. Money is tight, so any advise on getting this covered would be helpful. Thanks, DeAnn in Arizona, Mom to Austin 11, 6, and CHARgE Whitney 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 I have friends nearby (California) who are seeing Dr. Cotton. They are going in for the same surgery. Last attempt, the child got sick. Insurance is covering surgery, but they are having to come up with flight and hotel costs on their own. They have friends who are offering up airlines points or mileage as well as point for hotel discounts. As far as Dr. Cotton goes, he is the man you want to see!!!!!!!! He responds to e-mails too. Bernie Hill, Mom of cHARGEr 7, Amber 10 Dr. Cotton's clinich Whitney recently underwent the tracheal reconstruction surgery, where they remove cartlage from her rib, and reconstruct her airway with it. The surgery went well, however, she still can't breath well without the trach. Her ENT here in Arizona is now going to refer us to Dr. Cotton's clinch in Ohio. He thinks she it two complicated. Has any of you had any experience with him? Is this something that is usually covered by insurance? If so, what about the flight costs? We want to get this trach out soooo bad. Money is tight, so any advise on getting this covered would be helpful. Thanks, DeAnn in Arizona, Mom to Austin 11, 6, and CHARgE Whitney 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 Thanks, that's great to know that we can email him directly! DeAnn > > I have friends nearby (California) who are seeing Dr. Cotton. They are going in for the same surgery. Last attempt, the child got sick. Insurance is covering surgery, but they are having to come up with flight and hotel costs on their own. They have friends who are offering up airlines points or mileage as well as point for hotel discounts. As far as Dr. Cotton goes, he is the man you want to see!!!!!!!! He responds to e-mails too. > > Bernie Hill, Mom of cHARGEr 7, Amber 10 > > > Dr. Cotton's clinich > > Whitney recently underwent the tracheal reconstruction surgery, where > they remove cartlage from her rib, and reconstruct her airway with > it. The surgery went well, however, she still can't breath well > without the trach. Her ENT here in Arizona is now going to refer us > to Dr. Cotton's clinch in Ohio. He thinks she it two complicated. > Has any of you had any experience with him? Is this something that is > usually covered by insurance? If so, what about the flight costs? We > want to get this trach out soooo bad. Money is tight, so any advise > on getting this covered would be helpful. Thanks, > > DeAnn in Arizona, Mom to Austin 11, 6, and CHARgE Whitney 3 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 Cathy, that is my fear, that our daughter just has to many issues to ever get her trach out. Her ENT here is pretty experienced, and didn't offer much hope that she will ever get it out. Her coanal atrisia has been repaired 5 times, and I believe she may need another repair. She has a ton of secretions, and she has something called subglottic stinosis, some kind of narrowing above her vocal cords. She also battles with reflux and vomiting every so often. I can only hope that Dr. Cotton will find some answers that Whitney's ENT missed. Thanks so much for the information about insurance and travel. DeAnn > > we went to Dr Cotton from New York, Our insurance covered the Dr's visit but > not the travel,hotel, etc. I would call Dr Cottons office to see if they p > articipate w/your insurance and also call your insurance company. Some > insurance companies cover travl, my did not. They do have a ROnald McDOnald house > there that is pretty nice. We made the trip 3 or 4 times. However, Dr > Cotton was not able to get my daughter's trach out. There are not gaurantees, > but he is the best! He was straight with us, did her coanal atresia repair > again, and then said his reconstructive surgery would not help w/her particual > issues. > There are some companies out there that pay for flights, i have a list > somehwere. Miracle Flights is one. We drove, it took us 11 hours but we wanted a > car, and didn't know how long we would be there and able to come home. > Dr COtton sees a lot of CHARG kids. > Good luck > Cathie, mom to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 Hi DeAnn, Did your ent give you an idea why the tracheal reconstruction, while successful, hasn't helped Whitney's breathing? Are there lung issues or central nervous system issues? What does your ent think Dr. Cotton might address? We also had considered going to Dr. Cotton, but Kendra did get the trach out at age 3, so we did not have to go there. :-) Dr. Cotton's clinich Whitney recently underwent the tracheal reconstruction surgery, where they remove cartlage from her rib, and reconstruct her airway with it. The surgery went well, however, she still can't breath well without the trach. Her ENT here in Arizona is now going to refer us to Dr. Cotton's clinch in Ohio. He thinks she it two complicated. Has any of you had any experience with him? Is this something that is usually covered by insurance? If so, what about the flight costs? We want to get this trach out soooo bad. Money is tight, so any advise on getting this covered would be helpful. Thanks, DeAnn in Arizona, Mom to Austin 11, 6, and CHARgE Whitney 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 DeAnn, how old is your daughter? A lot of the problems do get resolved as they get bigger and stronger. We were also told by her 2nd ENT that the trach would probably never come out. But we did not give up.! We attempted several times. She had the coanal atresia repaired 7 times. I beleive the average is 4.5 times. 's kept closing, and scar tissuie forms after the surgery. A few of the surgeries were only to remove scar tissue. As she got bigger, the openeing could be bigger. She also had the subglottic stenoisis. Now she has one big whole between both sides of the nasal passages. She still had to have 2 repairs after Dr Cotton did it through the palate. Dr Cotton was very honest w/us. Originally, at the first visit he thought he could do his reconsruction, that is why we went back. It wasnt until after he did the trans palate repair that he realized his repair would not work. Again, time, time! I know this is frustrating, as i was so frustrated. Speech therapy also helped w/teaching her to bring her tongue foward. She also refluxed alot. Feel free to contact me privately if you want to talk more, i will give you my phone #. Good Luck, dont EVER give up hope! Cathie, mom to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 ive never sen him but have heard great things bout him hes one of the top charge people LOL > > Hi DeAnn, > > Did your ent give you an idea why the tracheal reconstruction, while > successful, hasn't helped Whitney's breathing? Are there lung issues or > central nervous system issues? What does your ent think Dr. Cotton might > address? > > We also had considered going to Dr. Cotton, but Kendra did get the trach > out at age 3, so we did not have to go there. > > :-) > Dr. Cotton's clinich > > Whitney recently underwent the tracheal reconstruction surgery, where > they remove cartlage from her rib, and reconstruct her airway with > it. The surgery went well, however, she still can't breath well > without the trach. Her ENT here in Arizona is now going to refer us > to Dr. Cotton's clinch in Ohio. He thinks she it two complicated. > Has any of you had any experience with him? Is this something that is > usually covered by insurance? If so, what about the flight costs? We > want to get this trach out soooo bad. Money is tight, so any advise > on getting this covered would be helpful. Thanks, > > DeAnn in Arizona, Mom to Austin 11, 6, and CHARgE Whitney 3 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 DeAnn, We're from Mason, Ohio, about 30 minutes north of Cincinnati, and go to Cincinnati Children's for services. We've seen Dr. Cotton for a couple of issues, though nothing airway related, so I can't answer your questions there--although I know from reputation that he's supposedly the best in the country (or, I think, maybe the world, as he gets referrals from many different countries). If you decide to look further into making the trip and need advice or assistance on making travel arrangements, transportation, etc., feel free to email me directly at lakcharge@.... On flights, you may want to check both to Cincinnati and Dayton. Dayton will be a little further drive to the hospital (about an hour compared to about 20 minutes from Cincinnati), but the flights are often much cheaper through Dayton. There's a nice Mc House next to the hospital, but not many hotels nearby. If you want to stay in a hotel, you'll be about 15-20 minutes away to find something decent and reasonable. , mom to (4) http://kauffmanlak.blogspot.com/ --------------------------------- Sponsored Link Mortgage rates near 39yr lows. $420,000 Mortgage for $1,399/mo - Calculate new house payment Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Cathy, Whitney turned 3 last July. She had the trans palital repair at about 8 weeks old, and several stint placements after that. Our ENT here in Arizona seemed really excited to have Whitney as a patient at first, and now seems to have given up on her. He doesn't give strait answeres as I don't think he really knows why she isn't able to breath without the trach. He just says that she has to many little things that are preventing her from breathing well without her trach. Thanks for your offer of help. We look forward to some answers. DeAnn > > > > DeAnn, > how old is your daughter? A lot of the problems do get resolved as they get > bigger and stronger. We were also told by her 2nd ENT that the trach would > probably never come out. But we did not give up.! We attempted several > times. She had the coanal atresia repaired 7 times. I beleive the average is > 4.5 times. 's kept closing, and scar tissuie forms after the surgery. A > few of the surgeries were only to remove scar tissue. As she got bigger, the > openeing could be bigger. She also had the subglottic stenoisis. Now she > has one big whole between both sides of the nasal passages. She still had to > have 2 repairs after Dr Cotton did it through the palate. > Dr Cotton was very honest w/us. Originally, at the first visit he thought he > could do his reconsruction, that is why we went back. It wasnt until after > he did the trans palate repair that he realized his repair would not work. > Again, time, time! I know this is frustrating, as i was so frustrated. > Speech therapy also helped w/teaching her to bring her tongue foward. She also > refluxed alot. > Feel free to contact me privately if you want to talk more, i will give you > my phone #. > Good Luck, dont EVER give up hope! > Cathie, mom to > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2006 Report Share Posted November 15, 2006 Dr Cotton is the best for airway issuse, He can be alittle stubrun when it comes to new ideas, He want to take out my son Saliva Glands and we wanted to do Botox for is asperation issue. He was reluctunt, but with some pressure he agreed to try Botox. Beside being conservitive he is the best. raymond(son cole 2year old Charge) Kauffman wrote: DeAnn, We're from Mason, Ohio, about 30 minutes north of Cincinnati, and go to Cincinnati Children's for services. We've seen Dr. Cotton for a couple of issues, though nothing airway related, so I can't answer your questions there--although I know from reputation that he's supposedly the best in the country (or, I think, maybe the world, as he gets referrals from many different countries). If you decide to look further into making the trip and need advice or assistance on making travel arrangements, transportation, etc., feel free to email me directly at lakcharge@.... On flights, you may want to check both to Cincinnati and Dayton. Dayton will be a little further drive to the hospital (about an hour compared to about 20 minutes from Cincinnati), but the flights are often much cheaper through Dayton. There's a nice Mc House next to the hospital, but not many hotels nearby. If you want to stay in a hotel, you'll be about 15-20 minutes away to find something decent and reasonable. , mom to (4) http://kauffmanlak.blogspot.com/ --------------------------------- Sponsored Link Mortgage rates near 39yr lows. $420,000 Mortgage for $1,399/mo - Calculate new house payment Quote Link to comment Share on other sites More sharing options...
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