Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 with me no but dont let taht stop you LOL i was just one of a few j tube worked for a long long time but we jsut switched to gtube again and took the glal bladder out that was three years ago now look at me fighting fit so to speak havign soem hormone probs wich i will write about when im done with the other posts lol love you all x > > Thanks for all the wonderful congrats, Ive come home this evening > and I have needed a good cry, happy tears for a change!!! but so > touched by you all, and in disbelief I have a place at Manchester, I > phoned again this morning to the University to double check incase > they had made a mistake. > > Amelie is looking good for theatre tomorrow there is a bed on ICU as > we speak, although things change quickly i am optimistic. > > I am having major reservations about the disassociation, Since her > mic-key was put in her jejunum i have not seen any visible reflux, > well very very rare only on severe coughing and retching has she > brought some up. I know they said she was silently refluxing, and > she has been back in the whole time sick, but could this all be > viral illness the time of the year here in the UK is cold and bugs > are everywhere. > > I am thinking about asking to repeat her Ph study, > what do you all think??? > Can the jejunum feeding stay as a permanent fixture????? > > she is gaining weight slowly. > > lol Les xx > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group 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 web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 with me no but dont let taht stop you LOL i was just one of a few j tube worked for a long long time but we jsut switched to gtube again and took the glal bladder out that was three years ago now look at me fighting fit so to speak havign soem hormone probs wich i will write about when im done with the other posts lol love you all x > > Thanks for all the wonderful congrats, Ive come home this evening > and I have needed a good cry, happy tears for a change!!! but so > touched by you all, and in disbelief I have a place at Manchester, I > phoned again this morning to the University to double check incase > they had made a mistake. > > Amelie is looking good for theatre tomorrow there is a bed on ICU as > we speak, although things change quickly i am optimistic. > > I am having major reservations about the disassociation, Since her > mic-key was put in her jejunum i have not seen any visible reflux, > well very very rare only on severe coughing and retching has she > brought some up. I know they said she was silently refluxing, and > she has been back in the whole time sick, but could this all be > viral illness the time of the year here in the UK is cold and bugs > are everywhere. > > I am thinking about asking to repeat her Ph study, > what do you all think??? > Can the jejunum feeding stay as a permanent fixture????? > > she is gaining weight slowly. > > lol Les xx > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group 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 web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Lesley, All I know is that you have to feel that you are doing the right thing going in (at least as much as possible). She certainly has been sick a lot, but you do want to make sure that you are treating the right cause. Wouldn't it be something if the results from tomorrow's test changed all the plans? Kim > > > I am having major reservations about the disassociation, Since her > > mic-key was put in her jejunum i have not seen any visible reflux, > > well very very rare only on severe coughing and retching has she > > brought some up. I know they said she was silently refluxing, and > > she has been back in the whole time sick, but could this all be > > viral illness the time of the year here in the UK is cold and bugs > > are everywhere. > > > > I am thinking about asking to repeat her Ph study, > > what do you all think??? > > Can the jejunum feeding stay as a permanent fixture????? > > > > she is gaining weight slowly. > > > > lol Les xx > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group 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 web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Lesley, All I know is that you have to feel that you are doing the right thing going in (at least as much as possible). She certainly has been sick a lot, but you do want to make sure that you are treating the right cause. Wouldn't it be something if the results from tomorrow's test changed all the plans? Kim > > > I am having major reservations about the disassociation, Since her > > mic-key was put in her jejunum i have not seen any visible reflux, > > well very very rare only on severe coughing and retching has she > > brought some up. I know they said she was silently refluxing, and > > she has been back in the whole time sick, but could this all be > > viral illness the time of the year here in the UK is cold and bugs > > are everywhere. > > > > I am thinking about asking to repeat her Ph study, > > what do you all think??? > > Can the jejunum feeding stay as a permanent fixture????? > > > > she is gaining weight slowly. > > > > lol Les xx > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group 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 web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Lesley, All I know is that you have to feel that you are doing the right thing going in (at least as much as possible). She certainly has been sick a lot, but you do want to make sure that you are treating the right cause. Wouldn't it be something if the results from tomorrow's test changed all the plans? Kim > > > I am having major reservations about the disassociation, Since her > > mic-key was put in her jejunum i have not seen any visible reflux, > > well very very rare only on severe coughing and retching has she > > brought some up. I know they said she was silently refluxing, and > > she has been back in the whole time sick, but could this all be > > viral illness the time of the year here in the UK is cold and bugs > > are everywhere. > > > > I am thinking about asking to repeat her Ph study, > > what do you all think??? > > Can the jejunum feeding stay as a permanent fixture????? > > > > she is gaining weight slowly. > > > > lol Les xx > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group 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 web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 Lesley, Please know I will be praying for Amelie until you give us the good news that things start looking up for her. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 Lesley, sorry to hear about the unsuccessful extubation attempt. It's probably best to wait for major surgery as you say, it would be difficult for her to handle considering the problems with this smaller procedure. I hope she is able to be extubated soon and you can find some alternative to the dissociation that works for you all. > > Attempted to extubate yesterday, no success and back on after 30 > minutes,( i think it was a little too soon for Amelie) she had the > most awful tugging noise with every breath, and was in distress. Weir > kawfolks@... > http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 Lesley, sorry to hear about the unsuccessful extubation attempt. It's probably best to wait for major surgery as you say, it would be difficult for her to handle considering the problems with this smaller procedure. I hope she is able to be extubated soon and you can find some alternative to the dissociation that works for you all. > > Attempted to extubate yesterday, no success and back on after 30 > minutes,( i think it was a little too soon for Amelie) she had the > most awful tugging noise with every breath, and was in distress. Weir > kawfolks@... > http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 Dear Lesley, I am sorry to hear that Amelie is struggling, but I know that she is a fighter .. I am saying a special prayer for Amelie and also for you, I pray that God will send you peace and give you strength... Sending a healing prayer to you across the waters. Give Amelie a hug for us, Love and prayers, n-mom to 3yrs. CHARGE ,Zach 10yrs. Jordan 7 yrs, Candace 2yrs and wife toLester for 11 yrs. --------------------------------- Relax. Yahoo! Mail virus scanning helps detect nasty viruses! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 Dear Lesley, I am sorry to hear that Amelie is struggling, but I know that she is a fighter .. I am saying a special prayer for Amelie and also for you, I pray that God will send you peace and give you strength... Sending a healing prayer to you across the waters. Give Amelie a hug for us, Love and prayers, n-mom to 3yrs. CHARGE ,Zach 10yrs. Jordan 7 yrs, Candace 2yrs and wife toLester for 11 yrs. --------------------------------- Relax. Yahoo! Mail virus scanning helps detect nasty viruses! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 Lesley- I have no idea about the disassociation really. All I can relate it to is our struggles with the fundoplication -- and choosing to wait rather than make a permanent anatomical change for something that could resolve itself. But that was not at the time a life-threatening issue. Aubrie was not as sick as Amelie is right now. If she were, our decision would have been more difficult. I think you are right to question the need for it. What if this is viral and she improves? What if the j-tube is a big enough help to get her through? All of your questions seemed absolutely valid to me. And your concerns about her ability to manage another huge surgery right now seem valid too. I hope that you have an opportunity for some good long discussions with the entire team of specialists to come up with a decision that you can feel comfortable with. 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 March 20, 2006 Report Share Posted March 20, 2006 Lesley- I have no idea about the disassociation really. All I can relate it to is our struggles with the fundoplication -- and choosing to wait rather than make a permanent anatomical change for something that could resolve itself. But that was not at the time a life-threatening issue. Aubrie was not as sick as Amelie is right now. If she were, our decision would have been more difficult. I think you are right to question the need for it. What if this is viral and she improves? What if the j-tube is a big enough help to get her through? All of your questions seemed absolutely valid to me. And your concerns about her ability to manage another huge surgery right now seem valid too. I hope that you have an opportunity for some good long discussions with the entire team of specialists to come up with a decision that you can feel comfortable with. 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 March 20, 2006 Report Share Posted March 20, 2006 glad to hear shes stable as for disociation godo idea to elave it for nwo love u > > Lesley- > I have no idea about the disassociation really. All I can relate it to is > our struggles with the fundoplication -- and choosing to wait rather than > make a permanent anatomical change for something that could resolve > itself. > But that was not at the time a life-threatening issue. Aubrie was not as > sick as Amelie is right now. If she were, our decision would have been > more > difficult. > > I think you are right to question the need for it. What if this is viral > and she improves? What if the j-tube is a big enough help to get her > through? All of your questions seemed absolutely valid to me. And your > concerns about her ability to manage another huge surgery right now seem > valid too. > > I hope that you have an opportunity for some good long discussions with > the > entire team of specialists to come up with a decision that you can feel > comfortable with. > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group 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 web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 glad to hear shes stable as for disociation godo idea to elave it for nwo love u > > Lesley- > I have no idea about the disassociation really. All I can relate it to is > our struggles with the fundoplication -- and choosing to wait rather than > make a permanent anatomical change for something that could resolve > itself. > But that was not at the time a life-threatening issue. Aubrie was not as > sick as Amelie is right now. If she were, our decision would have been > more > difficult. > > I think you are right to question the need for it. What if this is viral > and she improves? What if the j-tube is a big enough help to get her > through? All of your questions seemed absolutely valid to me. And your > concerns about her ability to manage another huge surgery right now seem > valid too. > > I hope that you have an opportunity for some good long discussions with > the > entire team of specialists to come up with a decision that you can feel > comfortable with. > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group 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 web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 glad to hear shes stable as for disociation godo idea to elave it for nwo love u > > Lesley- > I have no idea about the disassociation really. All I can relate it to is > our struggles with the fundoplication -- and choosing to wait rather than > make a permanent anatomical change for something that could resolve > itself. > But that was not at the time a life-threatening issue. Aubrie was not as > sick as Amelie is right now. If she were, our decision would have been > more > difficult. > > I think you are right to question the need for it. What if this is viral > and she improves? What if the j-tube is a big enough help to get her > through? All of your questions seemed absolutely valid to me. And your > concerns about her ability to manage another huge surgery right now seem > valid too. > > I hope that you have an opportunity for some good long discussions with > the > entire team of specialists to come up with a decision that you can feel > comfortable with. > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group 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 web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 Lesley, Sending lots of prayers and hugs your way. Hope that little Amelie is off the vent and ready to go home soon. I also hope you find some answers on alternatives for the disassociation. , mom to (4) --------------------------------- Yahoo! Mail Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 Lesley, Sending lots of prayers and hugs your way. Hope that little Amelie is off the vent and ready to go home soon. I also hope you find some answers on alternatives for the disassociation. , mom to (4) --------------------------------- Yahoo! Mail Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 Lesley, Sending lots of prayers and hugs your way. Hope that little Amelie is off the vent and ready to go home soon. I also hope you find some answers on alternatives for the disassociation. , mom to (4) --------------------------------- Yahoo! Mail Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Lesley, Does it seem like the J-tube is helping at all? MacKenzie had one for 3.5 years and it worked wonders. We also had to vent her stomach 24/7. She had many of the same symptoms as Amelie. Mac's lower left lobe collapsed as well and she still has areas of atelectasis (sp?). But with each year she gets stronger and only had 1 pnemonia this winter. I think Amelie needs to get stronger before any major surgery is considered. Has anyone ever mentioned TPN. It sounds scary but there are kids that have done well for a time on this. I think maybe Ellen, at one point? My thoughts are with you. Jeanie Colp mom to MacKenzie 7 CHARGE, Tyler 14 & Zachary 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Lesley, The thing that bothers me is how badly she gets the pneumonia and how fast! It seems she would have to be refluxing then aspirating A LOT to make things so severe - I don't know it just doesn't make sense to me that reflux is the sole problem! The dissasociation presumes it is, do this then she will be fine. I would want to feel reasonably certain that this were true before proceeding, since you are not certain, saying no to it seems very reasonable. I am sure that 30 minutes off the vent was a very long agonizing 30 minutes! What a relief that the vent can help her now while she needs it. Even so, we all hope she gets stong enough to come off of it VERY SOON. Kim > Attempted to extubate yesterday, no success and back on after 30 > minutes,( i think it was a little too soon for Amelie) she had the > most awful tugging noise with every breath, and was in distress. > they said her throat was swollen and so have started giving her > steroids to reduce this and they are going to try again tomorrow, > sats are low 90's and for some strange reason she is on insulin with > high blood sugars 19.7, she has never had this before she always has > low blood sugars around 3.5. > > NOT GOING AHEAD WITH DISASSOCIATION!! decided if she can not cope > with a 10 minute scope under GA how would she go on for 8 hours, not > prepared to take this risk would never get over it if she didnt pull > through, also had some advice private email, and someone else who > has had this done has faeces in the oesophagus, and it has not been > a success, so all off putting and too scary. > > Not told surgeon yet dont know what the solution is or if there is > one, my heads in bits really about the whole thing. > > need to ask for another ph since tube passed to jejunum, to see how > bad reflux is, it could have improved, and also all this recent > illness could just be due to viral, its the time of the year over > here. > > WHAT DO YOU THINK????? > > LES > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group 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 web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Lesley, The thing that bothers me is how badly she gets the pneumonia and how fast! It seems she would have to be refluxing then aspirating A LOT to make things so severe - I don't know it just doesn't make sense to me that reflux is the sole problem! The dissasociation presumes it is, do this then she will be fine. I would want to feel reasonably certain that this were true before proceeding, since you are not certain, saying no to it seems very reasonable. I am sure that 30 minutes off the vent was a very long agonizing 30 minutes! What a relief that the vent can help her now while she needs it. Even so, we all hope she gets stong enough to come off of it VERY SOON. Kim > Attempted to extubate yesterday, no success and back on after 30 > minutes,( i think it was a little too soon for Amelie) she had the > most awful tugging noise with every breath, and was in distress. > they said her throat was swollen and so have started giving her > steroids to reduce this and they are going to try again tomorrow, > sats are low 90's and for some strange reason she is on insulin with > high blood sugars 19.7, she has never had this before she always has > low blood sugars around 3.5. > > NOT GOING AHEAD WITH DISASSOCIATION!! decided if she can not cope > with a 10 minute scope under GA how would she go on for 8 hours, not > prepared to take this risk would never get over it if she didnt pull > through, also had some advice private email, and someone else who > has had this done has faeces in the oesophagus, and it has not been > a success, so all off putting and too scary. > > Not told surgeon yet dont know what the solution is or if there is > one, my heads in bits really about the whole thing. > > need to ask for another ph since tube passed to jejunum, to see how > bad reflux is, it could have improved, and also all this recent > illness could just be due to viral, its the time of the year over > here. > > WHAT DO YOU THINK????? > > LES > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group 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 web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Lesley, The thing that bothers me is how badly she gets the pneumonia and how fast! It seems she would have to be refluxing then aspirating A LOT to make things so severe - I don't know it just doesn't make sense to me that reflux is the sole problem! The dissasociation presumes it is, do this then she will be fine. I would want to feel reasonably certain that this were true before proceeding, since you are not certain, saying no to it seems very reasonable. I am sure that 30 minutes off the vent was a very long agonizing 30 minutes! What a relief that the vent can help her now while she needs it. Even so, we all hope she gets stong enough to come off of it VERY SOON. Kim > Attempted to extubate yesterday, no success and back on after 30 > minutes,( i think it was a little too soon for Amelie) she had the > most awful tugging noise with every breath, and was in distress. > they said her throat was swollen and so have started giving her > steroids to reduce this and they are going to try again tomorrow, > sats are low 90's and for some strange reason she is on insulin with > high blood sugars 19.7, she has never had this before she always has > low blood sugars around 3.5. > > NOT GOING AHEAD WITH DISASSOCIATION!! decided if she can not cope > with a 10 minute scope under GA how would she go on for 8 hours, not > prepared to take this risk would never get over it if she didnt pull > through, also had some advice private email, and someone else who > has had this done has faeces in the oesophagus, and it has not been > a success, so all off putting and too scary. > > Not told surgeon yet dont know what the solution is or if there is > one, my heads in bits really about the whole thing. > > need to ask for another ph since tube passed to jejunum, to see how > bad reflux is, it could have improved, and also all this recent > illness could just be due to viral, its the time of the year over > here. > > WHAT DO YOU THINK????? > > LES > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group 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 web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 jeanie i was on it fro five hole years and have had long stints of it to it did work wonders for me good old tpn > > Lesley, > > The thing that bothers me is how badly she gets the pneumonia and how > fast! It seems she would have to be refluxing then aspirating A LOT > to make things so severe - I don't know it just doesn't make sense to > me that reflux is the sole problem! The dissasociation presumes it > is, do this then she will be fine. I would want to feel reasonably > certain that this were true before proceeding, since you are not > certain, saying no to it seems very reasonable. > > I am sure that 30 minutes off the vent was a very long agonizing 30 > minutes! What a relief that the vent can help her now while she needs > it. Even so, we all hope she gets stong enough to come off of it VERY > SOON. > > Kim > > > > Attempted to extubate yesterday, no success and back on after 30 > > minutes,( i think it was a little too soon for Amelie) she had the > > most awful tugging noise with every breath, and was in distress. > > they said her throat was swollen and so have started giving her > > steroids to reduce this and they are going to try again tomorrow, > > sats are low 90's and for some strange reason she is on insulin with > > high blood sugars 19.7, she has never had this before she always has > > low blood sugars around 3.5. > > > > NOT GOING AHEAD WITH DISASSOCIATION!! decided if she can not cope > > with a 10 minute scope under GA how would she go on for 8 hours, not > > prepared to take this risk would never get over it if she didnt pull > > through, also had some advice private email, and someone else who > > has had this done has faeces in the oesophagus, and it has not been > > a success, so all off putting and too scary. > > > > Not told surgeon yet dont know what the solution is or if there is > > one, my heads in bits really about the whole thing. > > > > need to ask for another ph since tube passed to jejunum, to see how > > bad reflux is, it could have improved, and also all this recent > > illness could just be due to viral, its the time of the year over > > here. > > > > WHAT DO YOU THINK????? > > > > LES > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group 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 web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 jeanie i was on it fro five hole years and have had long stints of it to it did work wonders for me good old tpn > > Lesley, > > The thing that bothers me is how badly she gets the pneumonia and how > fast! It seems she would have to be refluxing then aspirating A LOT > to make things so severe - I don't know it just doesn't make sense to > me that reflux is the sole problem! The dissasociation presumes it > is, do this then she will be fine. I would want to feel reasonably > certain that this were true before proceeding, since you are not > certain, saying no to it seems very reasonable. > > I am sure that 30 minutes off the vent was a very long agonizing 30 > minutes! What a relief that the vent can help her now while she needs > it. Even so, we all hope she gets stong enough to come off of it VERY > SOON. > > Kim > > > > Attempted to extubate yesterday, no success and back on after 30 > > minutes,( i think it was a little too soon for Amelie) she had the > > most awful tugging noise with every breath, and was in distress. > > they said her throat was swollen and so have started giving her > > steroids to reduce this and they are going to try again tomorrow, > > sats are low 90's and for some strange reason she is on insulin with > > high blood sugars 19.7, she has never had this before she always has > > low blood sugars around 3.5. > > > > NOT GOING AHEAD WITH DISASSOCIATION!! decided if she can not cope > > with a 10 minute scope under GA how would she go on for 8 hours, not > > prepared to take this risk would never get over it if she didnt pull > > through, also had some advice private email, and someone else who > > has had this done has faeces in the oesophagus, and it has not been > > a success, so all off putting and too scary. > > > > Not told surgeon yet dont know what the solution is or if there is > > one, my heads in bits really about the whole thing. > > > > need to ask for another ph since tube passed to jejunum, to see how > > bad reflux is, it could have improved, and also all this recent > > illness could just be due to viral, its the time of the year over > > here. > > > > WHAT DO YOU THINK????? > > > > LES > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group 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 web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Ellen, Wow, my memory impresses me today. I thought it was you that recieved TPN. You're living proof that it can work and help to increase strength. Jeanie Quote Link to comment Share on other sites More sharing options...
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