Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 this goes with learning to listen to your childs lung sounds and learning what is normal ........ 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 14, 2002 Report Share Posted October 14, 2002 & Bo, we don't have a lot of experience with this (a bit when Kennedy was very little but I can't remember much and she resolved it) but I will be looking forward to hearing an update on as soon as you two can manage. You are not a FAILURE in any way with having to bring him to the hospital - it is better to be safe than sorry.... Please know you are all thought of as you go through this, ~ 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: Stridor and Inverting YIKES This child sounds like he is in respiratory distress. I would not hold off on getting him medical attention. Not getting adequate ventilation can lead to numerous problems. I was told when Mark was an infant to watch for the sign on inverted chest it is called retraction and get him help if I saw this starting. Do you have a home care nurse? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 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 14, 2002 Report Share Posted October 14, 2002 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 14, 2002 Report Share Posted October 14, 2002 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 14, 2002 Report Share Posted October 14, 2002 Bo, Yes my Mark did end up with a fundoplycation done. He had several aspiration pneumonia's first. He also had a J tube and a G tube for a while then just a G tube. Please keep me posted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 Bo, Yes my Mark did end up with a fundoplycation done. He had several aspiration pneumonia's first. He also had a J tube and a G tube for a while then just a G tube. Please keep me posted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 Bo, Yes my Mark did end up with a fundoplycation done. He had several aspiration pneumonia's first. He also had a J tube and a G tube for a while then just a G tube. Please keep me posted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 If you do surgery will you do both or do you have to decide to try the trach or the fundo first? Kim ---------- > >To: CHARGE >Subject: Re: Stridor and Inverting >Date: Mon, Oct 14, 2002, 4:04 PM > > 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 > > > > 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 If you do surgery will you do both or do you have to decide to try the trach or the fundo first? Kim ---------- > >To: CHARGE >Subject: Re: Stridor and Inverting >Date: Mon, Oct 14, 2002, 4:04 PM > > 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 > > > > 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 If you do surgery will you do both or do you have to decide to try the trach or the fundo first? Kim ---------- > >To: CHARGE >Subject: Re: Stridor and Inverting >Date: Mon, Oct 14, 2002, 4:04 PM > > 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 > > > > 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 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 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 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 Did Mark have a fundoplication done? Bo > , > My son Mark had a TEF repair also. One of the reasons that I > responded to you because I can remember this happening to us also when Mark > was small. It can be caused from aspiration pneumonia's which my Mark had > several very severe ones. I am thinking of you please keep me posted on how > things are going for you. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Did Mark have a fundoplication done? Bo > , > My son Mark had a TEF repair also. One of the reasons that I > responded to you because I can remember this happening to us also when Mark > was small. It can be caused from aspiration pneumonia's which my Mark had > several very severe ones. I am thinking of you please keep me posted on how > things are going for you. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Did Mark have a fundoplication done? Bo > , > My son Mark had a TEF repair also. One of the reasons that I > responded to you because I can remember this happening to us also when Mark > was small. It can be caused from aspiration pneumonia's which my Mark had > several very severe ones. I am thinking of you please keep me posted on how > things are going for you. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Does have a Nissen Fundoplication? We are wondering how they turn out with a TEF. The surgeon said they can get pretty tight because of the already stretched organs. Thanks, Bo > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Does have a Nissen Fundoplication? We are wondering how they turn out with a TEF. The surgeon said they can get pretty tight because of the already stretched organs. Thanks, Bo > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Does have a Nissen Fundoplication? We are wondering how they turn out with a TEF. The surgeon said they can get pretty tight because of the already stretched organs. Thanks, Bo > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Hi Bo- I don't think you were messaging me - but I thought I would put in a reply- With the decision to place a tracheotomy (at six weeks or age) was based upon two things: The stricturing of the scar tissue from the TEF/EA repair. Immediately post repair, the scars looked beautiful. Within a few weeks, he was scoped again as he was having tremendous difficulty managing his oral/nasal secretions and the scope showed tremendous stricturing of the scar tissue. A tracheotomy was indicated to secure a safe airway. was having tremendous difficulty managing his oral and nasal secretions. They were pooling in his mouth and being aspirated. He has a suction catheter taped into his mouth, which did not solve the problem. The tracheotomy provided us a safe way to remove secretions and prevent aspiration. We took excellent care of the trach, and the trach took excellent care of - but we did resent it for some time....... take care, best to you all- yuka 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 > > > > 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 Hi Bo- I don't think you were messaging me - but I thought I would put in a reply- With the decision to place a tracheotomy (at six weeks or age) was based upon two things: The stricturing of the scar tissue from the TEF/EA repair. Immediately post repair, the scars looked beautiful. Within a few weeks, he was scoped again as he was having tremendous difficulty managing his oral/nasal secretions and the scope showed tremendous stricturing of the scar tissue. A tracheotomy was indicated to secure a safe airway. was having tremendous difficulty managing his oral and nasal secretions. They were pooling in his mouth and being aspirated. He has a suction catheter taped into his mouth, which did not solve the problem. The tracheotomy provided us a safe way to remove secretions and prevent aspiration. We took excellent care of the trach, and the trach took excellent care of - but we did resent it for some time....... take care, best to you all- yuka 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 > > > > 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 Bo- did/does not have a Nissen. They spotted the TEF right at birth (hoarse cry - couldn't suction the esophagus). He had the g-tube placed that night. TEF repair was done at 2 weeks. PDA ligation at 4 weeks and tracheotomy at 6 weeks. I never knew actually why they did not do a Nissen. I actually have often wondered why they didn't (especially as reflux has been such an issue over the years) - but your post makes me realize - Dr McAlpin probably didn't do one with the g-tube because he knew the TEF repair would follow, and wanted to give every chance for there to be enough tissue to connect the esophagus in one surgery (rather than a series of stretches and connections.....) Since we're in the same geographical area - I thought I would mention the names of 's Drs - his G tube and TEF repair were done by Dr Columbus McAlpin, his PDA ligation by Dr Alfredo Trento and his tracheotomy (and subsequent dilatations, scoping and follow up) are being done by Dr Eugene Flaum. His endocrinologist is Dr Francine Kaufmann. Our family thinks of you often and wishes you every blessing, miracle and stroke of luck as these medically difficult times come up- best always, yuka Re: Stridor and Inverting > Does have a Nissen Fundoplication? We are wondering how they > turn out with a TEF. The surgeon said they can get pretty tight > because of the already stretched organs. > > Thanks, > Bo > > > > > > 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@... 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 Bo- did/does not have a Nissen. They spotted the TEF right at birth (hoarse cry - couldn't suction the esophagus). He had the g-tube placed that night. TEF repair was done at 2 weeks. PDA ligation at 4 weeks and tracheotomy at 6 weeks. I never knew actually why they did not do a Nissen. I actually have often wondered why they didn't (especially as reflux has been such an issue over the years) - but your post makes me realize - Dr McAlpin probably didn't do one with the g-tube because he knew the TEF repair would follow, and wanted to give every chance for there to be enough tissue to connect the esophagus in one surgery (rather than a series of stretches and connections.....) Since we're in the same geographical area - I thought I would mention the names of 's Drs - his G tube and TEF repair were done by Dr Columbus McAlpin, his PDA ligation by Dr Alfredo Trento and his tracheotomy (and subsequent dilatations, scoping and follow up) are being done by Dr Eugene Flaum. His endocrinologist is Dr Francine Kaufmann. Our family thinks of you often and wishes you every blessing, miracle and stroke of luck as these medically difficult times come up- best always, yuka Re: Stridor and Inverting > Does have a Nissen Fundoplication? We are wondering how they > turn out with a TEF. The surgeon said they can get pretty tight > because of the already stretched organs. > > Thanks, > Bo > > > > > > 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@... 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 Bo- did/does not have a Nissen. They spotted the TEF right at birth (hoarse cry - couldn't suction the esophagus). He had the g-tube placed that night. TEF repair was done at 2 weeks. PDA ligation at 4 weeks and tracheotomy at 6 weeks. I never knew actually why they did not do a Nissen. I actually have often wondered why they didn't (especially as reflux has been such an issue over the years) - but your post makes me realize - Dr McAlpin probably didn't do one with the g-tube because he knew the TEF repair would follow, and wanted to give every chance for there to be enough tissue to connect the esophagus in one surgery (rather than a series of stretches and connections.....) Since we're in the same geographical area - I thought I would mention the names of 's Drs - his G tube and TEF repair were done by Dr Columbus McAlpin, his PDA ligation by Dr Alfredo Trento and his tracheotomy (and subsequent dilatations, scoping and follow up) are being done by Dr Eugene Flaum. His endocrinologist is Dr Francine Kaufmann. Our family thinks of you often and wishes you every blessing, miracle and stroke of luck as these medically difficult times come up- best always, yuka Re: Stridor and Inverting > Does have a Nissen Fundoplication? We are wondering how they > turn out with a TEF. The surgeon said they can get pretty tight > because of the already stretched organs. > > Thanks, > Bo > > > > > > 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@... 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...
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