Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 My prayers are with you and your family Kathy, Mom to (18 Charge) and (20) Lesley Chan wrote: Surgery went ahead but shes sick on life support did not cope very well with the GA desats big in 100% oxygen which they have managed to get down to 70%, not what any expected especially after the ENT scop whereby she did not even need the vent and came home the following morning, so naturally we are all worried, I had to wait seven hours today before I could see her left festering in the parents waiting room pacing up and down,, they could not get any lines in it was a nightmare. settled for a femoral they couldnt get a central the ICU consiltant was not happy he said they only had one line in when she came out of theatre and it was positional, he has now suggested when she is well enough that a 'porto cath' is considered I dont think I know what he said this was, I think he said something under her skin that they can access easily for entry. we have come home we cant sleep in ICU and I feel drained and disappointed, she is heavily sedated and her condition is stable. will have a shower freshen up and head back will let you know tomorrow whats going on. 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 18, 2006 Report Share Posted March 18, 2006 My prayers are with you and your family Kathy, Mom to (18 Charge) and (20) Lesley Chan wrote: Surgery went ahead but shes sick on life support did not cope very well with the GA desats big in 100% oxygen which they have managed to get down to 70%, not what any expected especially after the ENT scop whereby she did not even need the vent and came home the following morning, so naturally we are all worried, I had to wait seven hours today before I could see her left festering in the parents waiting room pacing up and down,, they could not get any lines in it was a nightmare. settled for a femoral they couldnt get a central the ICU consiltant was not happy he said they only had one line in when she came out of theatre and it was positional, he has now suggested when she is well enough that a 'porto cath' is considered I dont think I know what he said this was, I think he said something under her skin that they can access easily for entry. we have come home we cant sleep in ICU and I feel drained and disappointed, she is heavily sedated and her condition is stable. will have a shower freshen up and head back will let you know tomorrow whats going on. 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 18, 2006 Report Share Posted March 18, 2006 Lesley, Our thoughts and prayers are with you and Amelie. Mom to 3 yrs --------------------------------- Yahoo! Mail Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Lesley, Our thoughts and prayers are with you and Amelie. Mom to 3 yrs --------------------------------- Yahoo! Mail Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Lesley, Our thoughts and prayers are with you and Amelie. Mom to 3 yrs --------------------------------- Yahoo! Mail Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Lesley, we are sending lots of positive thoughts for Amelie and you all. She is such a fighter. Hope she springs back soon. Please keep us all posted. We are all eager to know how she is doing. Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Lesley, we are sending lots of positive thoughts for Amelie and you all. She is such a fighter. Hope she springs back soon. Please keep us all posted. We are all eager to know how she is doing. Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Lesley, we are sending lots of positive thoughts for Amelie and you all. She is such a fighter. Hope she springs back soon. Please keep us all posted. We are all eager to know how she is doing. Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 I send my prayers to you and Amelie. Annette (mom) Ethan (charger) Lesley Chan wrote: Surgery went ahead but shes sick on life support did not cope very well with the GA desats big in 100% oxygen which they have managed to get down to 70%, not what any expected especially after the ENT scop whereby she did not even need the vent and came home the following morning, so naturally we are all worried, I had to wait seven hours today before I could see her left festering in the parents waiting room pacing up and down,, they could not get any lines in it was a nightmare. settled for a femoral they couldnt get a central the ICU consiltant was not happy he said they only had one line in when she came out of theatre and it was positional, he has now suggested when she is well enough that a 'porto cath' is considered I dont think I know what he said this was, I think he said something under her skin that they can access easily for entry. we have come home we cant sleep in ICU and I feel drained and disappointed, she is heavily sedated and her condition is stable. will have a shower freshen up and head back will let you know tomorrow whats going on. 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 19, 2006 Report Share Posted March 19, 2006 nichole i agree with you bout the ports but soemtimes even they arent the go wow ameilie seems more and mroe likme me one big question is how is her heart coz the last resort fo r\\r me was a central lien in the heart which lasted five ;years femeral be careful shes little so she could be fin but i got a huge clot form one of those but the one in the ohter leg was ok hope im not worrying u lol at least she got that op done now thats outa the way lol a port is like an artifucial veing soem of my cf friends have them they r great for them but they do give up love u > > I send my prayers to you and Amelie. > Annette (mom) Ethan (charger) > > Lesley Chan wrote: > > > Surgery went ahead but shes sick on life support did not cope very > well with the GA desats big in 100% oxygen which they have managed > to get down to 70%, not what any expected especially after the ENT > scop whereby she did not even need the vent and came home the > following morning, so naturally we are all worried, I had to wait > seven hours today before I could see her left festering in the > parents waiting room pacing up and down,, they could not get any > lines in it was a nightmare. settled for a femoral they couldnt get > a central > > the ICU consiltant was not happy he said they only had one line in > when she came out of theatre and it was positional, he has now > suggested when she is well enough that a 'porto cath' is considered > I dont think I know what he said this was, I think he said something > under her skin that they can access easily for entry. > > we have come home we cant sleep in ICU and I feel drained and > disappointed, she is heavily sedated and her condition is stable. > will have a shower freshen up and head back will let you know > tomorrow whats going on. > > 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 19, 2006 Report Share Posted March 19, 2006 nichole i agree with you bout the ports but soemtimes even they arent the go wow ameilie seems more and mroe likme me one big question is how is her heart coz the last resort fo r\\r me was a central lien in the heart which lasted five ;years femeral be careful shes little so she could be fin but i got a huge clot form one of those but the one in the ohter leg was ok hope im not worrying u lol at least she got that op done now thats outa the way lol a port is like an artifucial veing soem of my cf friends have them they r great for them but they do give up love u > > I send my prayers to you and Amelie. > Annette (mom) Ethan (charger) > > Lesley Chan wrote: > > > Surgery went ahead but shes sick on life support did not cope very > well with the GA desats big in 100% oxygen which they have managed > to get down to 70%, not what any expected especially after the ENT > scop whereby she did not even need the vent and came home the > following morning, so naturally we are all worried, I had to wait > seven hours today before I could see her left festering in the > parents waiting room pacing up and down,, they could not get any > lines in it was a nightmare. settled for a femoral they couldnt get > a central > > the ICU consiltant was not happy he said they only had one line in > when she came out of theatre and it was positional, he has now > suggested when she is well enough that a 'porto cath' is considered > I dont think I know what he said this was, I think he said something > under her skin that they can access easily for entry. > > we have come home we cant sleep in ICU and I feel drained and > disappointed, she is heavily sedated and her condition is stable. > will have a shower freshen up and head back will let you know > tomorrow whats going on. > > 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 19, 2006 Report Share Posted March 19, 2006 nichole i agree with you bout the ports but soemtimes even they arent the go wow ameilie seems more and mroe likme me one big question is how is her heart coz the last resort fo r\\r me was a central lien in the heart which lasted five ;years femeral be careful shes little so she could be fin but i got a huge clot form one of those but the one in the ohter leg was ok hope im not worrying u lol at least she got that op done now thats outa the way lol a port is like an artifucial veing soem of my cf friends have them they r great for them but they do give up love u > > I send my prayers to you and Amelie. > Annette (mom) Ethan (charger) > > Lesley Chan wrote: > > > Surgery went ahead but shes sick on life support did not cope very > well with the GA desats big in 100% oxygen which they have managed > to get down to 70%, not what any expected especially after the ENT > scop whereby she did not even need the vent and came home the > following morning, so naturally we are all worried, I had to wait > seven hours today before I could see her left festering in the > parents waiting room pacing up and down,, they could not get any > lines in it was a nightmare. settled for a femoral they couldnt get > a central > > the ICU consiltant was not happy he said they only had one line in > when she came out of theatre and it was positional, he has now > suggested when she is well enough that a 'porto cath' is considered > I dont think I know what he said this was, I think he said something > under her skin that they can access easily for entry. > > we have come home we cant sleep in ICU and I feel drained and > disappointed, she is heavily sedated and her condition is stable. > will have a shower freshen up and head back will let you know > tomorrow whats going on. > > 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...
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