Guest guest Posted May 6, 2005 Report Share Posted May 6, 2005 Welcome! I would suggest two books: DIABETES FOR DUMMIES and DR. BERNSTEIN'S DIABETES SOLUTION. There is a book called THE DIABETIC CHILD, but I don't know anything about it so cannot recommend or discommend it. hello Hello everyone, My name is Christy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 Hello Christy, I am glad that your daughter is doing well. My name is Ted, I have been a type I diabetic since 1964 (got it at about 2 years old), really I do not have any memories of not being diabetic. When I was growing up, my parents were pretty conscious of the importance of a good diet, for everybody in the family. I believe it made it easier for me that everyone else was eating the same things and in reasonable portions. A diabetic diet will be healthy for most anyone, so from that experience, I would suggest that the family as a whole adopt an appropriate diet. (My own family is my cat and me). One thing I really enjoyed when growing up was going to diabetic summer camp. It really helped me get a sense that I could do things on my own (I learned to give myself a shot there) and see that I was not the only one, aside from all the good times to be had at summer camp. I don't know what the right age to learn to give oneself their own shot is, but I think the earlier, the better, as it really increases one's independence as far as things like spending the night at friends homes or belonging to something like Scouts goes. One thing about shots that I can say for sure: They keep getting better and better as far as comfort goes. Don't get overwhelmed. Good things take time. I am no expert on diabetes (other than having it for a longtime), but don't hesitate to email me directly if you want to communicate that way (just beware that my typing is really slow; I will reply, it just may take a day or 3). I wish you and your family the best. Take care Ted Burzycki (Seattle) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 Hello Christy, I am glad that your daughter is doing well. My name is Ted, I have been a type I diabetic since 1964 (got it at about 2 years old), really I do not have any memories of not being diabetic. When I was growing up, my parents were pretty conscious of the importance of a good diet, for everybody in the family. I believe it made it easier for me that everyone else was eating the same things and in reasonable portions. A diabetic diet will be healthy for most anyone, so from that experience, I would suggest that the family as a whole adopt an appropriate diet. (My own family is my cat and me). One thing I really enjoyed when growing up was going to diabetic summer camp. It really helped me get a sense that I could do things on my own (I learned to give myself a shot there) and see that I was not the only one, aside from all the good times to be had at summer camp. I don't know what the right age to learn to give oneself their own shot is, but I think the earlier, the better, as it really increases one's independence as far as things like spending the night at friends homes or belonging to something like Scouts goes. One thing about shots that I can say for sure: They keep getting better and better as far as comfort goes. Don't get overwhelmed. Good things take time. I am no expert on diabetes (other than having it for a longtime), but don't hesitate to email me directly if you want to communicate that way (just beware that my typing is really slow; I will reply, it just may take a day or 3). I wish you and your family the best. Take care Ted Burzycki (Seattle) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 Hello Christy, I am glad that your daughter is doing well. My name is Ted, I have been a type I diabetic since 1964 (got it at about 2 years old), really I do not have any memories of not being diabetic. When I was growing up, my parents were pretty conscious of the importance of a good diet, for everybody in the family. I believe it made it easier for me that everyone else was eating the same things and in reasonable portions. A diabetic diet will be healthy for most anyone, so from that experience, I would suggest that the family as a whole adopt an appropriate diet. (My own family is my cat and me). One thing I really enjoyed when growing up was going to diabetic summer camp. It really helped me get a sense that I could do things on my own (I learned to give myself a shot there) and see that I was not the only one, aside from all the good times to be had at summer camp. I don't know what the right age to learn to give oneself their own shot is, but I think the earlier, the better, as it really increases one's independence as far as things like spending the night at friends homes or belonging to something like Scouts goes. One thing about shots that I can say for sure: They keep getting better and better as far as comfort goes. Don't get overwhelmed. Good things take time. I am no expert on diabetes (other than having it for a longtime), but don't hesitate to email me directly if you want to communicate that way (just beware that my typing is really slow; I will reply, it just may take a day or 3). I wish you and your family the best. Take care Ted Burzycki (Seattle) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2005 Report Share Posted August 25, 2005 AS I have said in the past, yes. All pharmaceutical companies have programs for people who need their medication but cannot afford it. If you go to a specific website for a specific brand you will find an 800# that you can call to be qualified by a customer service representative. Once qualified the drug company will arrange for you to have the meds directly shipped to you. Also, look at the hospitals in your area, especially if you are in a major metropolitan area. There is usually a county or city hospital that can provide you will free healthcare as well as meds..in fact all hospital who get federal funds are required by law to treat uninsured people to free healthcare. I mean everything - clinics, outpatients, inpatient treatment and meds. Also medicaid is insurance for the uninsured. It is a federal program administered by each state. If you go to your state government page, there should be a link to medicaid Hope this helps, Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2005 Report Share Posted August 25, 2005 AS I have said in the past, yes. All pharmaceutical companies have programs for people who need their medication but cannot afford it. If you go to a specific website for a specific brand you will find an 800# that you can call to be qualified by a customer service representative. Once qualified the drug company will arrange for you to have the meds directly shipped to you. Also, look at the hospitals in your area, especially if you are in a major metropolitan area. There is usually a county or city hospital that can provide you will free healthcare as well as meds..in fact all hospital who get federal funds are required by law to treat uninsured people to free healthcare. I mean everything - clinics, outpatients, inpatient treatment and meds. Also medicaid is insurance for the uninsured. It is a federal program administered by each state. If you go to your state government page, there should be a link to medicaid Hope this helps, Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 welcome to the charge list the palate and nissen in my opinion should be done now this admission and im sure others will agree with me heer theres a few babies in here that seem to be having this problem jen amanda chime in please isnt this wat you have does he have a trach i dont have one but i believe tis is one way then you get oxygen at least im a almost 21 year old charger who reads in here everyday and knows what happenx lol ive got reflux have they done a studdy to see if the reflux is aspirating then that means you really need a nissen sooner than later for me it didnt work but many it has so i try not to tell people to dotn unless its failed once hope this helps you will find this list great help hugs ellen in aus > > Hi, everyone. > My name is Akiko. We have 10 months old boy, Ryoto with CHARGE. > We were at Children's hospital in Seattle for 4.5 months after he was > born and he came home and he was doing fine (except couple of > hospitalization > due to pertussis, respiratory distress...). 3 weeks ago, he went back to > Children's for his heart VSD repair and he is still in PICU. His heart > surgery > went very well but it took almost 2 weeks to be extubated and now > he is on CPAP. He has bronchomalacia in his right lung and paralyzed left > diaphragm so those make him difficult to breath. If he gets agitated, > his bronchus tend to close, so they put him scheduled morphine and Ativan. > He is getting better and they are trying off CPAP for a few hours a day. > Hopefully he can get out of ICU very soon and come home. > With bronchomalacia, is he always at risk when intabated? He has cleft > palate and GJ tube (without Nissen), so at least palate repair and Nissen > should be done in the future... > Thank you, > Akiko (Mom to Souma(4) and Ryoto (10 month CHARGEr)) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 welcome to the charge list the palate and nissen in my opinion should be done now this admission and im sure others will agree with me heer theres a few babies in here that seem to be having this problem jen amanda chime in please isnt this wat you have does he have a trach i dont have one but i believe tis is one way then you get oxygen at least im a almost 21 year old charger who reads in here everyday and knows what happenx lol ive got reflux have they done a studdy to see if the reflux is aspirating then that means you really need a nissen sooner than later for me it didnt work but many it has so i try not to tell people to dotn unless its failed once hope this helps you will find this list great help hugs ellen in aus > > Hi, everyone. > My name is Akiko. We have 10 months old boy, Ryoto with CHARGE. > We were at Children's hospital in Seattle for 4.5 months after he was > born and he came home and he was doing fine (except couple of > hospitalization > due to pertussis, respiratory distress...). 3 weeks ago, he went back to > Children's for his heart VSD repair and he is still in PICU. His heart > surgery > went very well but it took almost 2 weeks to be extubated and now > he is on CPAP. He has bronchomalacia in his right lung and paralyzed left > diaphragm so those make him difficult to breath. If he gets agitated, > his bronchus tend to close, so they put him scheduled morphine and Ativan. > He is getting better and they are trying off CPAP for a few hours a day. > Hopefully he can get out of ICU very soon and come home. > With bronchomalacia, is he always at risk when intabated? He has cleft > palate and GJ tube (without Nissen), so at least palate repair and Nissen > should be done in the future... > Thank you, > Akiko (Mom to Souma(4) and Ryoto (10 month CHARGEr)) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 welcome to the charge list the palate and nissen in my opinion should be done now this admission and im sure others will agree with me heer theres a few babies in here that seem to be having this problem jen amanda chime in please isnt this wat you have does he have a trach i dont have one but i believe tis is one way then you get oxygen at least im a almost 21 year old charger who reads in here everyday and knows what happenx lol ive got reflux have they done a studdy to see if the reflux is aspirating then that means you really need a nissen sooner than later for me it didnt work but many it has so i try not to tell people to dotn unless its failed once hope this helps you will find this list great help hugs ellen in aus > > Hi, everyone. > My name is Akiko. We have 10 months old boy, Ryoto with CHARGE. > We were at Children's hospital in Seattle for 4.5 months after he was > born and he came home and he was doing fine (except couple of > hospitalization > due to pertussis, respiratory distress...). 3 weeks ago, he went back to > Children's for his heart VSD repair and he is still in PICU. His heart > surgery > went very well but it took almost 2 weeks to be extubated and now > he is on CPAP. He has bronchomalacia in his right lung and paralyzed left > diaphragm so those make him difficult to breath. If he gets agitated, > his bronchus tend to close, so they put him scheduled morphine and Ativan. > He is getting better and they are trying off CPAP for a few hours a day. > Hopefully he can get out of ICU very soon and come home. > With bronchomalacia, is he always at risk when intabated? He has cleft > palate and GJ tube (without Nissen), so at least palate repair and Nissen > should be done in the future... > Thank you, > Akiko (Mom to Souma(4) and Ryoto (10 month CHARGEr)) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 Hello Akiko and Ryoto hope you get your little boy home soon, you will get lots of great advice from parents on this support network, we have a 15 month old girl Amelie, and shes been in and out of hospital 11 of her 15 months, it can be very difficult early on, and she is always hard to extubate always needs longer than usual. good luck lesley x (UK) > Hi, everyone. > My name is Akiko. We have 10 months old boy, Ryoto with CHARGE. > We were at Children's hospital in Seattle for 4.5 months after he was > born and he came home and he was doing fine (except couple of > hospitalization > due to pertussis, respiratory distress...). 3 weeks ago, he went back to > Children's for his heart VSD repair and he is still in PICU. His heart > surgery > went very well but it took almost 2 weeks to be extubated and now > he is on CPAP. He has bronchomalacia in his right lung and paralyzed left > diaphragm so those make him difficult to breath. If he gets agitated, > his bronchus tend to close, so they put him scheduled morphine and Ativan. > He is getting better and they are trying off CPAP for a few hours a day. > Hopefully he can get out of ICU very soon and come home. > With bronchomalacia, is he always at risk when intabated? He has cleft > palate and GJ tube (without Nissen), so at least palate repair and Nissen > should be done in the future... > Thank you, > Akiko (Mom to Souma(4) and Ryoto (10 month CHARGEr)) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 Hello Akiko and Ryoto hope you get your little boy home soon, you will get lots of great advice from parents on this support network, we have a 15 month old girl Amelie, and shes been in and out of hospital 11 of her 15 months, it can be very difficult early on, and she is always hard to extubate always needs longer than usual. good luck lesley x (UK) > Hi, everyone. > My name is Akiko. We have 10 months old boy, Ryoto with CHARGE. > We were at Children's hospital in Seattle for 4.5 months after he was > born and he came home and he was doing fine (except couple of > hospitalization > due to pertussis, respiratory distress...). 3 weeks ago, he went back to > Children's for his heart VSD repair and he is still in PICU. His heart > surgery > went very well but it took almost 2 weeks to be extubated and now > he is on CPAP. He has bronchomalacia in his right lung and paralyzed left > diaphragm so those make him difficult to breath. If he gets agitated, > his bronchus tend to close, so they put him scheduled morphine and Ativan. > He is getting better and they are trying off CPAP for a few hours a day. > Hopefully he can get out of ICU very soon and come home. > With bronchomalacia, is he always at risk when intabated? He has cleft > palate and GJ tube (without Nissen), so at least palate repair and Nissen > should be done in the future... > Thank you, > Akiko (Mom to Souma(4) and Ryoto (10 month CHARGEr)) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 Hello Akiko and Ryoto hope you get your little boy home soon, you will get lots of great advice from parents on this support network, we have a 15 month old girl Amelie, and shes been in and out of hospital 11 of her 15 months, it can be very difficult early on, and she is always hard to extubate always needs longer than usual. good luck lesley x (UK) > Hi, everyone. > My name is Akiko. We have 10 months old boy, Ryoto with CHARGE. > We were at Children's hospital in Seattle for 4.5 months after he was > born and he came home and he was doing fine (except couple of > hospitalization > due to pertussis, respiratory distress...). 3 weeks ago, he went back to > Children's for his heart VSD repair and he is still in PICU. His heart > surgery > went very well but it took almost 2 weeks to be extubated and now > he is on CPAP. He has bronchomalacia in his right lung and paralyzed left > diaphragm so those make him difficult to breath. If he gets agitated, > his bronchus tend to close, so they put him scheduled morphine and Ativan. > He is getting better and they are trying off CPAP for a few hours a day. > Hopefully he can get out of ICU very soon and come home. > With bronchomalacia, is he always at risk when intabated? He has cleft > palate and GJ tube (without Nissen), so at least palate repair and Nissen > should be done in the future... > Thank you, > Akiko (Mom to Souma(4) and Ryoto (10 month CHARGEr)) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 Akiko, I believe they are at risk for every surgical procedure involving intubation. This is something that was made clear to us by Dr. Blake very early on (Dr. Blake is one of the big guns in the CHARGE world... ) Knock on wood only one of Kennedy's 18 intubations has yielded a difficult extubation back when she was 6 months old but I'm still very leery now even at 8 yrs. Welcome to our group, I hope you find it helpful and give a big hug to Ryoto from the Weir family... > > Hi, everyone. > My name is Akiko. We have 10 months old boy, Ryoto with CHARGE. > We were at Children's hospital in Seattle for 4.5 months after he was > born and he came home and he was doing fine (except couple of > hospitalization > due to pertussis, respiratory distress...). 3 weeks ago, he went back to > Children's for his heart VSD repair and he is still in PICU. His heart > surgery > went very well but it took almost 2 weeks to be extubated and now > he is on CPAP. He has bronchomalacia in his right lung and paralyzed left > diaphragm so those make him difficult to breath. If he gets agitated, > his bronchus tend to close, so they put him scheduled morphine and Ativan. > He is getting better and they are trying off CPAP for a few hours a day. > Hopefully he can get out of ICU very soon and come home. > With bronchomalacia, is he always at risk when intabated? He has cleft > palate and GJ tube (without Nissen), so at least palate repair and Nissen > should be done in the future... > Thank you, > Akiko (Mom to Souma(4) and Ryoto (10 month CHARGEr)) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 Akiko, I believe they are at risk for every surgical procedure involving intubation. This is something that was made clear to us by Dr. Blake very early on (Dr. Blake is one of the big guns in the CHARGE world... ) Knock on wood only one of Kennedy's 18 intubations has yielded a difficult extubation back when she was 6 months old but I'm still very leery now even at 8 yrs. Welcome to our group, I hope you find it helpful and give a big hug to Ryoto from the Weir family... > > Hi, everyone. > My name is Akiko. We have 10 months old boy, Ryoto with CHARGE. > We were at Children's hospital in Seattle for 4.5 months after he was > born and he came home and he was doing fine (except couple of > hospitalization > due to pertussis, respiratory distress...). 3 weeks ago, he went back to > Children's for his heart VSD repair and he is still in PICU. His heart > surgery > went very well but it took almost 2 weeks to be extubated and now > he is on CPAP. He has bronchomalacia in his right lung and paralyzed left > diaphragm so those make him difficult to breath. If he gets agitated, > his bronchus tend to close, so they put him scheduled morphine and Ativan. > He is getting better and they are trying off CPAP for a few hours a day. > Hopefully he can get out of ICU very soon and come home. > With bronchomalacia, is he always at risk when intabated? He has cleft > palate and GJ tube (without Nissen), so at least palate repair and Nissen > should be done in the future... > Thank you, > Akiko (Mom to Souma(4) and Ryoto (10 month CHARGEr)) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 you rright there is a risk to every op espcialy charge ones:P > > Akiko, > I believe they are at risk for every surgical procedure involving > intubation. This is something that was made clear to us by Dr. Blake very > early on (Dr. Blake is one of the big guns in the CHARGE world... > ) Knock > on wood only one of Kennedy's 18 intubations has yielded a difficult > extubation back when she was 6 months old but I'm still very leery now > even > at 8 yrs. > > Welcome to our group, I hope you find it helpful and give a big hug to > Ryoto > from the Weir family... > > > > > > > Hi, everyone. > > My name is Akiko. We have 10 months old boy, Ryoto with CHARGE. > > We were at Children's hospital in Seattle for 4.5 months after he was > > born and he came home and he was doing fine (except couple of > > hospitalization > > due to pertussis, respiratory distress...). 3 weeks ago, he went back to > > Children's for his heart VSD repair and he is still in PICU. His heart > > surgery > > went very well but it took almost 2 weeks to be extubated and now > > he is on CPAP. He has bronchomalacia in his right lung and paralyzed > left > > diaphragm so those make him difficult to breath. If he gets agitated, > > his bronchus tend to close, so they put him scheduled morphine and > Ativan. > > He is getting better and they are trying off CPAP for a few hours a day. > > Hopefully he can get out of ICU very soon and come home. > > With bronchomalacia, is he always at risk when intabated? He has cleft > > palate and GJ tube (without Nissen), so at least palate repair and > Nissen > > should be done in the future... > > Thank you, > > Akiko (Mom to Souma(4) and Ryoto (10 month CHARGEr)) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 you rright there is a risk to every op espcialy charge ones:P > > Akiko, > I believe they are at risk for every surgical procedure involving > intubation. This is something that was made clear to us by Dr. Blake very > early on (Dr. Blake is one of the big guns in the CHARGE world... > ) Knock > on wood only one of Kennedy's 18 intubations has yielded a difficult > extubation back when she was 6 months old but I'm still very leery now > even > at 8 yrs. > > Welcome to our group, I hope you find it helpful and give a big hug to > Ryoto > from the Weir family... > > > > > > > Hi, everyone. > > My name is Akiko. We have 10 months old boy, Ryoto with CHARGE. > > We were at Children's hospital in Seattle for 4.5 months after he was > > born and he came home and he was doing fine (except couple of > > hospitalization > > due to pertussis, respiratory distress...). 3 weeks ago, he went back to > > Children's for his heart VSD repair and he is still in PICU. His heart > > surgery > > went very well but it took almost 2 weeks to be extubated and now > > he is on CPAP. He has bronchomalacia in his right lung and paralyzed > left > > diaphragm so those make him difficult to breath. If he gets agitated, > > his bronchus tend to close, so they put him scheduled morphine and > Ativan. > > He is getting better and they are trying off CPAP for a few hours a day. > > Hopefully he can get out of ICU very soon and come home. > > With bronchomalacia, is he always at risk when intabated? He has cleft > > palate and GJ tube (without Nissen), so at least palate repair and > Nissen > > should be done in the future... > > Thank you, > > Akiko (Mom to Souma(4) and Ryoto (10 month CHARGEr)) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 you rright there is a risk to every op espcialy charge ones:P > > Akiko, > I believe they are at risk for every surgical procedure involving > intubation. This is something that was made clear to us by Dr. Blake very > early on (Dr. Blake is one of the big guns in the CHARGE world... > ) Knock > on wood only one of Kennedy's 18 intubations has yielded a difficult > extubation back when she was 6 months old but I'm still very leery now > even > at 8 yrs. > > Welcome to our group, I hope you find it helpful and give a big hug to > Ryoto > from the Weir family... > > > > > > > Hi, everyone. > > My name is Akiko. We have 10 months old boy, Ryoto with CHARGE. > > We were at Children's hospital in Seattle for 4.5 months after he was > > born and he came home and he was doing fine (except couple of > > hospitalization > > due to pertussis, respiratory distress...). 3 weeks ago, he went back to > > Children's for his heart VSD repair and he is still in PICU. His heart > > surgery > > went very well but it took almost 2 weeks to be extubated and now > > he is on CPAP. He has bronchomalacia in his right lung and paralyzed > left > > diaphragm so those make him difficult to breath. If he gets agitated, > > his bronchus tend to close, so they put him scheduled morphine and > Ativan. > > He is getting better and they are trying off CPAP for a few hours a day. > > Hopefully he can get out of ICU very soon and come home. > > With bronchomalacia, is he always at risk when intabated? He has cleft > > palate and GJ tube (without Nissen), so at least palate repair and > Nissen > > should be done in the future... > > Thank you, > > Akiko (Mom to Souma(4) and Ryoto (10 month CHARGEr)) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2006 Report Share Posted April 21, 2006 Akiko, Welcome! What absolutely beautiful names you all have. Do you mind me asking where you are from? Are your names specific to a nationality? They are all so wonderful. I do not have appropriate advice for you but I am betting there are tons of others on here who do. I just don't want to lead you down a wrong path. Sorry to hear about Ryoto's struggles. I hope you'll be getting it all under control soon. I'll be looking forward to learning more about Ryoto. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to hello Hi, everyone. My name is Akiko. We have 10 months old boy, Ryoto with CHARGE. We were at Children's hospital in Seattle for 4.5 months after he was born and he came home and he was doing fine (except couple of hospitalization due to pertussis, respiratory distress...). 3 weeks ago, he went back to Children's for his heart VSD repair and he is still in PICU. His heart surgery went very well but it took almost 2 weeks to be extubated and now he is on CPAP. He has bronchomalacia in his right lung and paralyzed left diaphragm so those make him difficult to breath. If he gets agitated, his bronchus tend to close, so they put him scheduled morphine and Ativan. He is getting better and they are trying off CPAP for a few hours a day. Hopefully he can get out of ICU very soon and come home. With bronchomalacia, is he always at risk when intabated? He has cleft palate and GJ tube (without Nissen), so at least palate repair and Nissen should be done in the future... Thank you, Akiko (Mom to Souma(4) and Ryoto (10 month CHARGEr)) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2006 Report Share Posted April 21, 2006 Akiko, Welcome! What absolutely beautiful names you all have. Do you mind me asking where you are from? Are your names specific to a nationality? They are all so wonderful. I do not have appropriate advice for you but I am betting there are tons of others on here who do. I just don't want to lead you down a wrong path. Sorry to hear about Ryoto's struggles. I hope you'll be getting it all under control soon. I'll be looking forward to learning more about Ryoto. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to hello Hi, everyone. My name is Akiko. We have 10 months old boy, Ryoto with CHARGE. We were at Children's hospital in Seattle for 4.5 months after he was born and he came home and he was doing fine (except couple of hospitalization due to pertussis, respiratory distress...). 3 weeks ago, he went back to Children's for his heart VSD repair and he is still in PICU. His heart surgery went very well but it took almost 2 weeks to be extubated and now he is on CPAP. He has bronchomalacia in his right lung and paralyzed left diaphragm so those make him difficult to breath. If he gets agitated, his bronchus tend to close, so they put him scheduled morphine and Ativan. He is getting better and they are trying off CPAP for a few hours a day. Hopefully he can get out of ICU very soon and come home. With bronchomalacia, is he always at risk when intabated? He has cleft palate and GJ tube (without Nissen), so at least palate repair and Nissen should be done in the future... Thank you, Akiko (Mom to Souma(4) and Ryoto (10 month CHARGEr)) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2006 Report Share Posted April 21, 2006 Akiko- Hello and welcome! Like Bonnie, I don't have any great advice since these are problems we managed to escape. However, I did want to welcome you and your family to our CHARGE family! I also love your names and was wondering about their origins. I hope some of the families who have dealt with similar respiratory issues can give you the answers you need. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2006 Report Share Posted April 21, 2006 Hi, my name is Mock My daughter, Cedie, is also 10 month's old. Ryoto and she seem to be going through alot of the same stuff. You can read her medical history at cedielynn.blogspot.com. Anyhow, what caught my attention is " If he gets agitated, his bronchus tend to close, so they put him scheduled morphine and Ativan " . Cedie is the same way. When she gets mad everything can go bad very quickly. HOWEVER, she has a LOT of trouble getting over the morphine and ativan. After her trach surgery, they had her on the morphine/ativan schedule. In hindsight, we really feel like they were overdosing her. We have since learned that when her crying/agitation starts to get out of control and it looks like she is going to start an " episode-i.e. bronc spasm " (you know b/c her color changes, she starts sweating, heart rate starts dropping, and sats go down) we give her with some extra O2 -usually by bagging her via her trach. Before her trach we held a " blow by " of O2 in front of her face. As for the Nissen, Cedie had hers done back in July. She has since had a swallow test done and has been cleared for all consistencies. However, in the past couple of months (more or less) we have noticed that she occasionally gags after her meals. It looks like she is trying to cough up a hairball (but not funny). It causes her distress unless you can get her g-tube reopened fast enough. Hope you can use this information. Let me know if I can be of any help. Mock - mom to Dylan (5) & Cedie (10 mth old charger) > > Hi, everyone. > My name is Akiko. We have 10 months old boy, Ryoto with CHARGE. > We were at Children's hospital in Seattle for 4.5 months after he was > born and he came home and he was doing fine (except couple of > hospitalization > due to pertussis, respiratory distress...). 3 weeks ago, he went back to > Children's for his heart VSD repair and he is still in PICU. His heart > surgery > went very well but it took almost 2 weeks to be extubated and now > he is on CPAP. He has bronchomalacia in his right lung and paralyzed left > diaphragm so those make him difficult to breath. If he gets agitated, > his bronchus tend to close, so they put him scheduled morphine and Ativan. > He is getting better and they are trying off CPAP for a few hours a day. > Hopefully he can get out of ICU very soon and come home. > With bronchomalacia, is he always at risk when intabated? He has cleft > palate and GJ tube (without Nissen), so at least palate repair and Nissen > should be done in the future... > Thank you, > Akiko (Mom to Souma(4) and Ryoto (10 month CHARGEr)) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2006 Report Share Posted April 21, 2006 Hi, my name is Mock My daughter, Cedie, is also 10 month's old. Ryoto and she seem to be going through alot of the same stuff. You can read her medical history at cedielynn.blogspot.com. Anyhow, what caught my attention is " If he gets agitated, his bronchus tend to close, so they put him scheduled morphine and Ativan " . Cedie is the same way. When she gets mad everything can go bad very quickly. HOWEVER, she has a LOT of trouble getting over the morphine and ativan. After her trach surgery, they had her on the morphine/ativan schedule. In hindsight, we really feel like they were overdosing her. We have since learned that when her crying/agitation starts to get out of control and it looks like she is going to start an " episode-i.e. bronc spasm " (you know b/c her color changes, she starts sweating, heart rate starts dropping, and sats go down) we give her with some extra O2 -usually by bagging her via her trach. Before her trach we held a " blow by " of O2 in front of her face. As for the Nissen, Cedie had hers done back in July. She has since had a swallow test done and has been cleared for all consistencies. However, in the past couple of months (more or less) we have noticed that she occasionally gags after her meals. It looks like she is trying to cough up a hairball (but not funny). It causes her distress unless you can get her g-tube reopened fast enough. Hope you can use this information. Let me know if I can be of any help. Mock - mom to Dylan (5) & Cedie (10 mth old charger) > > Hi, everyone. > My name is Akiko. We have 10 months old boy, Ryoto with CHARGE. > We were at Children's hospital in Seattle for 4.5 months after he was > born and he came home and he was doing fine (except couple of > hospitalization > due to pertussis, respiratory distress...). 3 weeks ago, he went back to > Children's for his heart VSD repair and he is still in PICU. His heart > surgery > went very well but it took almost 2 weeks to be extubated and now > he is on CPAP. He has bronchomalacia in his right lung and paralyzed left > diaphragm so those make him difficult to breath. If he gets agitated, > his bronchus tend to close, so they put him scheduled morphine and Ativan. > He is getting better and they are trying off CPAP for a few hours a day. > Hopefully he can get out of ICU very soon and come home. > With bronchomalacia, is he always at risk when intabated? He has cleft > palate and GJ tube (without Nissen), so at least palate repair and Nissen > should be done in the future... > Thank you, > Akiko (Mom to Souma(4) and Ryoto (10 month CHARGEr)) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2006 Report Share Posted April 21, 2006 Hi, my name is Mock My daughter, Cedie, is also 10 month's old. Ryoto and she seem to be going through alot of the same stuff. You can read her medical history at cedielynn.blogspot.com. Anyhow, what caught my attention is " If he gets agitated, his bronchus tend to close, so they put him scheduled morphine and Ativan " . Cedie is the same way. When she gets mad everything can go bad very quickly. HOWEVER, she has a LOT of trouble getting over the morphine and ativan. After her trach surgery, they had her on the morphine/ativan schedule. In hindsight, we really feel like they were overdosing her. We have since learned that when her crying/agitation starts to get out of control and it looks like she is going to start an " episode-i.e. bronc spasm " (you know b/c her color changes, she starts sweating, heart rate starts dropping, and sats go down) we give her with some extra O2 -usually by bagging her via her trach. Before her trach we held a " blow by " of O2 in front of her face. As for the Nissen, Cedie had hers done back in July. She has since had a swallow test done and has been cleared for all consistencies. However, in the past couple of months (more or less) we have noticed that she occasionally gags after her meals. It looks like she is trying to cough up a hairball (but not funny). It causes her distress unless you can get her g-tube reopened fast enough. Hope you can use this information. Let me know if I can be of any help. Mock - mom to Dylan (5) & Cedie (10 mth old charger) > > Hi, everyone. > My name is Akiko. We have 10 months old boy, Ryoto with CHARGE. > We were at Children's hospital in Seattle for 4.5 months after he was > born and he came home and he was doing fine (except couple of > hospitalization > due to pertussis, respiratory distress...). 3 weeks ago, he went back to > Children's for his heart VSD repair and he is still in PICU. His heart > surgery > went very well but it took almost 2 weeks to be extubated and now > he is on CPAP. He has bronchomalacia in his right lung and paralyzed left > diaphragm so those make him difficult to breath. If he gets agitated, > his bronchus tend to close, so they put him scheduled morphine and Ativan. > He is getting better and they are trying off CPAP for a few hours a day. > Hopefully he can get out of ICU very soon and come home. > With bronchomalacia, is he always at risk when intabated? He has cleft > palate and GJ tube (without Nissen), so at least palate repair and Nissen > should be done in the future... > Thank you, > Akiko (Mom to Souma(4) and Ryoto (10 month CHARGEr)) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2009 Report Share Posted November 19, 2009 Sharon I hope you aren't coming down with the flu. You are in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Lifehttp://breastcancerpatientssoulmatesforlife.bravehost.com/ Anxiety Depression and Breast Cancerhttp://health.groups.yahoo.com/group/AnxietyDepressionandBreastCancerAngel Feather Loomerwww.angelfeatherloomer.blogspot.comThe Cancer Clubwww.cancerclub.com -----Original Message-----From: wobbletowalk@...Sent: Wed, 18 Nov 2009 20:14:28 -0800 (PST)To: mserslife Subject: hello I really don't have anything to say but Hello. lol I think I need to go to bed. I feel 'rummy'. It's been a long day and I am tired. I didn't really do much... went out and watered the chickens and ducks this afternoon, washed laundry and did some dishes. That's the extent of it. But it feels like I have run a marathon. hugs to each of you.... SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2009 Report Share Posted November 19, 2009 Sharon I hope you aren't coming down with the flu. You are in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Lifehttp://breastcancerpatientssoulmatesforlife.bravehost.com/ Anxiety Depression and Breast Cancerhttp://health.groups.yahoo.com/group/AnxietyDepressionandBreastCancerAngel Feather Loomerwww.angelfeatherloomer.blogspot.comThe Cancer Clubwww.cancerclub.com -----Original Message-----From: wobbletowalk@...Sent: Wed, 18 Nov 2009 20:14:28 -0800 (PST)To: mserslife Subject: hello I really don't have anything to say but Hello. lol I think I need to go to bed. I feel 'rummy'. It's been a long day and I am tired. I didn't really do much... went out and watered the chickens and ducks this afternoon, washed laundry and did some dishes. That's the extent of it. But it feels like I have run a marathon. hugs to each of you.... SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. Quote Link to comment Share on other sites More sharing options...
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