Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Thanks, Yuka, that is very kind of you. I am wondering if they are ever going to actually look into sean's throat and see what the problem is. I'd really like to know exactly what is swollen or constricted. It's frustrating as you know... and maybe the worst is just watching be so frustrated. We sort of thought we were out of the woods when we came home the first, but now we see how naive we were! > > > Hi Bo and - > > > > > > I am hoping that by the time you are reading this that you are safe > > and > > > happy and that is breathing comfortably. > > > I just wanted to chime in with everyone else about the possible > > causes- > > > > > > 's respiratory system was his Achilles heel for the first four > > years of > > > his life. In the end - all the contributing factors were: > > > > > > (1) Stricturing of the tracheal scar tissue post TEF/EA repair, > > which even > > > with a tracheotomy would cause him to go completely blue depending > > on his > > > head position > > > > > > (2) Aspiration and aspiration pneumonia from poor swallowing > > coordination > > > and esophageal stricturing post TEF/EA repair > > > > > > (3) Reflux, which in addition to all the GI distress also > > silently > > > aspirated these acidic stomach contents, which then mimicked > > asthma. His > > > reflux didn't even seem like 'reflux' at first - more like an open > > carafe. > > > All I had to do was tilt his head lower than his torso and his > > stomach > > > contents would come running out his nose - and we saw the same > > thing you > > > mentioned - if the bolus was let to gravity feed too quickly, it > > would erupt > > > out his mouth- > > > > > > We also did the same thing did - whenever was exhausting > > himself > > > with breathing (retracting), we would let the oxygen blow by until > > his > > > breathing could relax, and would leave it on that level while he > > slept. > > > > > > We went through alot of months of upper respiratory infections, > > sometimes > > > back to back - alot of mucolyctics, expectorants, decongestants, > > nebulizer > > > treatments, oxygen, suctioning, percussive chest therapy and > > antibiotics. > > > He was only hospitalized one time for pneumonia when he was three. > > It was > > > the scariest thing - admitting him. I felt like I had somehow > > failed. It > > > was the nicest five days of that year. We were in the hospital > > simply to > > > get better - not to discover anything new, and there was no > > rollercoaster - > > > just oxygen, IV antibiotics, and alot of pediatric professionals > > > complimenting us on 's care and development. It was only then > > that I > > > realized how the NICU experience had a tremendous level of trauma to > > > it....... > > > > > > We are all rooting for your family here - > > > take good care, > > > best always, > > > > > > Yuka > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@c... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > > July 25-27, 2003. Information will be available at our website > > www.chargesyndrome.org or by calling 1-. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Thanks, Yuka, that is very kind of you. I am wondering if they are ever going to actually look into sean's throat and see what the problem is. I'd really like to know exactly what is swollen or constricted. It's frustrating as you know... and maybe the worst is just watching be so frustrated. We sort of thought we were out of the woods when we came home the first, but now we see how naive we were! > > > Hi Bo and - > > > > > > I am hoping that by the time you are reading this that you are safe > > and > > > happy and that is breathing comfortably. > > > I just wanted to chime in with everyone else about the possible > > causes- > > > > > > 's respiratory system was his Achilles heel for the first four > > years of > > > his life. In the end - all the contributing factors were: > > > > > > (1) Stricturing of the tracheal scar tissue post TEF/EA repair, > > which even > > > with a tracheotomy would cause him to go completely blue depending > > on his > > > head position > > > > > > (2) Aspiration and aspiration pneumonia from poor swallowing > > coordination > > > and esophageal stricturing post TEF/EA repair > > > > > > (3) Reflux, which in addition to all the GI distress also > > silently > > > aspirated these acidic stomach contents, which then mimicked > > asthma. His > > > reflux didn't even seem like 'reflux' at first - more like an open > > carafe. > > > All I had to do was tilt his head lower than his torso and his > > stomach > > > contents would come running out his nose - and we saw the same > > thing you > > > mentioned - if the bolus was let to gravity feed too quickly, it > > would erupt > > > out his mouth- > > > > > > We also did the same thing did - whenever was exhausting > > himself > > > with breathing (retracting), we would let the oxygen blow by until > > his > > > breathing could relax, and would leave it on that level while he > > slept. > > > > > > We went through alot of months of upper respiratory infections, > > sometimes > > > back to back - alot of mucolyctics, expectorants, decongestants, > > nebulizer > > > treatments, oxygen, suctioning, percussive chest therapy and > > antibiotics. > > > He was only hospitalized one time for pneumonia when he was three. > > It was > > > the scariest thing - admitting him. I felt like I had somehow > > failed. It > > > was the nicest five days of that year. We were in the hospital > > simply to > > > get better - not to discover anything new, and there was no > > rollercoaster - > > > just oxygen, IV antibiotics, and alot of pediatric professionals > > > complimenting us on 's care and development. It was only then > > that I > > > realized how the NICU experience had a tremendous level of trauma to > > > it....... > > > > > > We are all rooting for your family here - > > > take good care, > > > best always, > > > > > > Yuka > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@c... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > > July 25-27, 2003. Information will be available at our website > > www.chargesyndrome.org or by calling 1-. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Thanks, Yuka, that is very kind of you. I am wondering if they are ever going to actually look into sean's throat and see what the problem is. I'd really like to know exactly what is swollen or constricted. It's frustrating as you know... and maybe the worst is just watching be so frustrated. We sort of thought we were out of the woods when we came home the first, but now we see how naive we were! > > > Hi Bo and - > > > > > > I am hoping that by the time you are reading this that you are safe > > and > > > happy and that is breathing comfortably. > > > I just wanted to chime in with everyone else about the possible > > causes- > > > > > > 's respiratory system was his Achilles heel for the first four > > years of > > > his life. In the end - all the contributing factors were: > > > > > > (1) Stricturing of the tracheal scar tissue post TEF/EA repair, > > which even > > > with a tracheotomy would cause him to go completely blue depending > > on his > > > head position > > > > > > (2) Aspiration and aspiration pneumonia from poor swallowing > > coordination > > > and esophageal stricturing post TEF/EA repair > > > > > > (3) Reflux, which in addition to all the GI distress also > > silently > > > aspirated these acidic stomach contents, which then mimicked > > asthma. His > > > reflux didn't even seem like 'reflux' at first - more like an open > > carafe. > > > All I had to do was tilt his head lower than his torso and his > > stomach > > > contents would come running out his nose - and we saw the same > > thing you > > > mentioned - if the bolus was let to gravity feed too quickly, it > > would erupt > > > out his mouth- > > > > > > We also did the same thing did - whenever was exhausting > > himself > > > with breathing (retracting), we would let the oxygen blow by until > > his > > > breathing could relax, and would leave it on that level while he > > slept. > > > > > > We went through alot of months of upper respiratory infections, > > sometimes > > > back to back - alot of mucolyctics, expectorants, decongestants, > > nebulizer > > > treatments, oxygen, suctioning, percussive chest therapy and > > antibiotics. > > > He was only hospitalized one time for pneumonia when he was three. > > It was > > > the scariest thing - admitting him. I felt like I had somehow > > failed. It > > > was the nicest five days of that year. We were in the hospital > > simply to > > > get better - not to discover anything new, and there was no > > rollercoaster - > > > just oxygen, IV antibiotics, and alot of pediatric professionals > > > complimenting us on 's care and development. It was only then > > that I > > > realized how the NICU experience had a tremendous level of trauma to > > > it....... > > > > > > We are all rooting for your family here - > > > take good care, > > > best always, > > > > > > Yuka > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@c... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > > July 25-27, 2003. Information will be available at our website > > www.chargesyndrome.org or by calling 1-. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 I second that...it has been the number one life-changing surgery for Kennedy. We went in knowing the 30% risk of failure but were willing to take that chance. We have been lucky, it is still intact now at almost age 5 ( she got it at 6 months) ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Re: Re: Stridor and Inverting Bo, The fundo has helped many CHARGE kids a lot! I really wish we had ours sooner. We came close to getting a trach MANY times but always seemed to just slide by without one. But lots of kids do get them. Anyway, I just wanted to let you know that the fundo can be VERY help1ful and releive a lot of suffering.2 Deedee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 I second that...it has been the number one life-changing surgery for Kennedy. We went in knowing the 30% risk of failure but were willing to take that chance. We have been lucky, it is still intact now at almost age 5 ( she got it at 6 months) ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Re: Re: Stridor and Inverting Bo, The fundo has helped many CHARGE kids a lot! I really wish we had ours sooner. We came close to getting a trach MANY times but always seemed to just slide by without one. But lots of kids do get them. Anyway, I just wanted to let you know that the fundo can be VERY help1ful and releive a lot of suffering.2 Deedee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 I second that...it has been the number one life-changing surgery for Kennedy. We went in knowing the 30% risk of failure but were willing to take that chance. We have been lucky, it is still intact now at almost age 5 ( she got it at 6 months) ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Re: Re: Stridor and Inverting Bo, The fundo has helped many CHARGE kids a lot! I really wish we had ours sooner. We came close to getting a trach MANY times but always seemed to just slide by without one. But lots of kids do get them. Anyway, I just wanted to let you know that the fundo can be VERY help1ful and releive a lot of suffering.2 Deedee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 The trick as a new parent though is wanting to make sure we don't rush in to unnecessary procedures and hoping that things will improve. When it is not cut and dry, you absolutely have to have this procedure, these decisions are so hard to make. For many of us, after the decision has been made and we see how well our kids are doing, we only see the good and forget the anguish of trying to decide. Best wishes Bo and as you make your decisions. Kim Lauger ---------- >From: maryechick12@... >To: CHARGE >Subject: Re: Re: Stridor and Inverting >Date: Mon, Oct 14, 2002, 6:07 PM > > to be quite honest with you my child has both and both are a lot better > then a dead child sorry to be so blunt but it really bothers me that > people are so against these two things that can make life so much easier > for their childern... > > http://community.webtv.net/maryechick12/ > http://community.webtv.net/maryechick12/pets > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > 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 > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 to be quite honest with you my child has both and both are a lot better then a dead child sorry to be so blunt but it really bothers me that people are so against these two things that can make life so much easier for their childern... http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 to be quite honest with you my child has both and both are a lot better then a dead child sorry to be so blunt but it really bothers me that people are so against these two things that can make life so much easier for their childern... http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 to be quite honest with you my child has both and both are a lot better then a dead child sorry to be so blunt but it really bothers me that people are so against these two things that can make life so much easier for their childern... http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Like I said before I was being very blunt there didnt mean to upset anyone either just I wasnt given a choice for either one but right from the start I could see he needed both it is just so frustrating when I see how much both have helped But his doctors have seen other CHARGE childern so they new what to look for right away and what had to be done I guess we got really lucky that way ...there really were not any choices to make ...they fed him he threw up ... he extubated himself he couldnt breath it was very cut and dryed with him........ MAry http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Like I said before I was being very blunt there didnt mean to upset anyone either just I wasnt given a choice for either one but right from the start I could see he needed both it is just so frustrating when I see how much both have helped But his doctors have seen other CHARGE childern so they new what to look for right away and what had to be done I guess we got really lucky that way ...there really were not any choices to make ...they fed him he threw up ... he extubated himself he couldnt breath it was very cut and dryed with him........ MAry http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Like I said before I was being very blunt there didnt mean to upset anyone either just I wasnt given a choice for either one but right from the start I could see he needed both it is just so frustrating when I see how much both have helped But his doctors have seen other CHARGE childern so they new what to look for right away and what had to be done I guess we got really lucky that way ...there really were not any choices to make ...they fed him he threw up ... he extubated himself he couldnt breath it was very cut and dryed with him........ MAry http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 one last thing had both plus open heart surgery all done b the time he was 6 weeks old.....so yeah it is a good thing they didnt give us a choice about the trach and the fundo...... http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 one last thing had both plus open heart surgery all done b the time he was 6 weeks old.....so yeah it is a good thing they didnt give us a choice about the trach and the fundo...... http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 one last thing had both plus open heart surgery all done b the time he was 6 weeks old.....so yeah it is a good thing they didnt give us a choice about the trach and the fundo...... http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Bo, Sam, now 3 months got a fundo at 4 weeks, it has done wonders for him. He used to have to be suctioned before and after every feeding and sometimes in between as well. Now it is rare he has to be suctioned at all - maybe only once or twice since he came home from the hospital almost 2 months ago. The nurses in the NICU were all in favor of it, he actually passed two tests that he should have failed to get it. The surgeon did it on the basis of a clinical study. Anyway, just wanted you to know it was very helpful to us in case you end of having to get it. Jan mom to Sam 3 months ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Bo, Sam, now 3 months got a fundo at 4 weeks, it has done wonders for him. He used to have to be suctioned before and after every feeding and sometimes in between as well. Now it is rare he has to be suctioned at all - maybe only once or twice since he came home from the hospital almost 2 months ago. The nurses in the NICU were all in favor of it, he actually passed two tests that he should have failed to get it. The surgeon did it on the basis of a clinical study. Anyway, just wanted you to know it was very helpful to us in case you end of having to get it. Jan mom to Sam 3 months ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Bo, Sam, now 3 months got a fundo at 4 weeks, it has done wonders for him. He used to have to be suctioned before and after every feeding and sometimes in between as well. Now it is rare he has to be suctioned at all - maybe only once or twice since he came home from the hospital almost 2 months ago. The nurses in the NICU were all in favor of it, he actually passed two tests that he should have failed to get it. The surgeon did it on the basis of a clinical study. Anyway, just wanted you to know it was very helpful to us in case you end of having to get it. Jan mom to Sam 3 months ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Bo, na had a trach, no fundo, they managed the reflux with a g-tube and j-tube combo. We unlike some on the list wanted a trach when Bri was small, so we could take her home and they(the drs) didn't want to. So she got very sick as soon as she got home and we had to trach her while she had a full blown RSV attack that sucked almost everything out of her. The trach gave her a stable airway and although I was deathly afraid of one, it was one of the best things that was ever done for her. Sue being a nurse made it easier, but we couldn't get the drs to believe us. With the trach, Bri had a good life, was able to be ventilated as needed, they used the trach for all but one of her surgeries, except for the open heart, the trach was in the way then. We never thought that we failed for having a trach, she was much better off having it. She had coanial atreaisa, and the stents were much worse in my eyes than having a trach. If you have any questions, please contact me. We could give you some input that may help, I have been waiting to see when you got back online. Campanale jcampanale --- AIM johncampanale@... --- yahoo messenger johncampanale@... --- msn messenger johncampanale@... johncampanale@... http://home.attbi.com/~briannacampanale http://members.truepath.com/hedgebuilder0074/brianna.html http://members.truepath.com/hedgebuilder0074/newbrianna.html <><><><><><><><><><><><><><><><><><><><><><> HEDGEBUILDERS---Protecting YOUR family and you...... www.hedge.org/sr/0074.htm " Making the Internet Safe for Work and Play " <><><><><><><><><><><><><><><><><><><><><><> Re: Stridor and Inverting They must've mentioned a tracheostomy to you. Did you just outright refuse to do it? or did it never get quite that bad? is in the hospital right now with and he keeps getting upset and desatting and going around in circles with that. Meanwhile, he's receiving breathing treatments and they keep talking about the fundo and the trach. Don't want either. Just want him to be better. Bo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Bo, na had a trach, no fundo, they managed the reflux with a g-tube and j-tube combo. We unlike some on the list wanted a trach when Bri was small, so we could take her home and they(the drs) didn't want to. So she got very sick as soon as she got home and we had to trach her while she had a full blown RSV attack that sucked almost everything out of her. The trach gave her a stable airway and although I was deathly afraid of one, it was one of the best things that was ever done for her. Sue being a nurse made it easier, but we couldn't get the drs to believe us. With the trach, Bri had a good life, was able to be ventilated as needed, they used the trach for all but one of her surgeries, except for the open heart, the trach was in the way then. We never thought that we failed for having a trach, she was much better off having it. She had coanial atreaisa, and the stents were much worse in my eyes than having a trach. If you have any questions, please contact me. We could give you some input that may help, I have been waiting to see when you got back online. Campanale jcampanale --- AIM johncampanale@... --- yahoo messenger johncampanale@... --- msn messenger johncampanale@... johncampanale@... http://home.attbi.com/~briannacampanale http://members.truepath.com/hedgebuilder0074/brianna.html http://members.truepath.com/hedgebuilder0074/newbrianna.html <><><><><><><><><><><><><><><><><><><><><><> HEDGEBUILDERS---Protecting YOUR family and you...... www.hedge.org/sr/0074.htm " Making the Internet Safe for Work and Play " <><><><><><><><><><><><><><><><><><><><><><> Re: Stridor and Inverting They must've mentioned a tracheostomy to you. Did you just outright refuse to do it? or did it never get quite that bad? is in the hospital right now with and he keeps getting upset and desatting and going around in circles with that. Meanwhile, he's receiving breathing treatments and they keep talking about the fundo and the trach. Don't want either. Just want him to be better. Bo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Bo, na had a trach, no fundo, they managed the reflux with a g-tube and j-tube combo. We unlike some on the list wanted a trach when Bri was small, so we could take her home and they(the drs) didn't want to. So she got very sick as soon as she got home and we had to trach her while she had a full blown RSV attack that sucked almost everything out of her. The trach gave her a stable airway and although I was deathly afraid of one, it was one of the best things that was ever done for her. Sue being a nurse made it easier, but we couldn't get the drs to believe us. With the trach, Bri had a good life, was able to be ventilated as needed, they used the trach for all but one of her surgeries, except for the open heart, the trach was in the way then. We never thought that we failed for having a trach, she was much better off having it. She had coanial atreaisa, and the stents were much worse in my eyes than having a trach. If you have any questions, please contact me. We could give you some input that may help, I have been waiting to see when you got back online. Campanale jcampanale --- AIM johncampanale@... --- yahoo messenger johncampanale@... --- msn messenger johncampanale@... johncampanale@... http://home.attbi.com/~briannacampanale http://members.truepath.com/hedgebuilder0074/brianna.html http://members.truepath.com/hedgebuilder0074/newbrianna.html <><><><><><><><><><><><><><><><><><><><><><> HEDGEBUILDERS---Protecting YOUR family and you...... www.hedge.org/sr/0074.htm " Making the Internet Safe for Work and Play " <><><><><><><><><><><><><><><><><><><><><><> Re: Stridor and Inverting They must've mentioned a tracheostomy to you. Did you just outright refuse to do it? or did it never get quite that bad? is in the hospital right now with and he keeps getting upset and desatting and going around in circles with that. Meanwhile, he's receiving breathing treatments and they keep talking about the fundo and the trach. Don't want either. Just want him to be better. Bo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 I appreciate what your saying. I don't believe is in danger of dying right now and if it gets to that point we will not hesitate to do what we need to do. But we also want to keep surgeries to a minimum, especially after it took 5 times to extubate him after his g-tube surgery. is doing really a lot better now. I am just trying to get as much information as possible. It's mainly the trauma of the surgeries that we are worried about. Re: Re: Stridor and Inverting to be quite honest with you my child has both and both are a lot better then a dead child sorry to be so blunt but it really bothers me that people are so against these two things that can make life so much easier for their childern... http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 I appreciate what your saying. I don't believe is in danger of dying right now and if it gets to that point we will not hesitate to do what we need to do. But we also want to keep surgeries to a minimum, especially after it took 5 times to extubate him after his g-tube surgery. is doing really a lot better now. I am just trying to get as much information as possible. It's mainly the trauma of the surgeries that we are worried about. Re: Re: Stridor and Inverting to be quite honest with you my child has both and both are a lot better then a dead child sorry to be so blunt but it really bothers me that people are so against these two things that can make life so much easier for their childern... http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 I appreciate what your saying. I don't believe is in danger of dying right now and if it gets to that point we will not hesitate to do what we need to do. But we also want to keep surgeries to a minimum, especially after it took 5 times to extubate him after his g-tube surgery. is doing really a lot better now. I am just trying to get as much information as possible. It's mainly the trauma of the surgeries that we are worried about. Re: Re: Stridor and Inverting to be quite honest with you my child has both and both are a lot better then a dead child sorry to be so blunt but it really bothers me that people are so against these two things that can make life so much easier for their childern... http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
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