Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Lesley- Hang in there. We're all sending positive thoughts your way -- from all over the world. Surely lil' Amelie will feel that and get well. 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 17, 2006 Report Share Posted March 17, 2006 Lesley- Hang in there. We're all sending positive thoughts your way -- from all over the world. Surely lil' Amelie will feel that and get well. 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 17, 2006 Report Share Posted March 17, 2006 Lesley- Hang in there. We're all sending positive thoughts your way -- from all over the world. Surely lil' Amelie will feel that and get well. 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 18, 2006 Report Share Posted March 18, 2006 Lesley, I am praying, praying, praying! Rest up little one, then bounce back and surprise everyone like we know you can!!!!!!!!!! Kim > > > 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, I am praying, praying, praying! Rest up little one, then bounce back and surprise everyone like we know you can!!!!!!!!!! Kim > > > 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 oh Lesley- for what its worth, my heart is with you. Keep your grace and your love around you like a precious shawl- I will keep you and Amelie and your family in my thoughts- " stable " is still a wonderful word amidst all the other disheartening elements- looking forward to a record breaking recovery- yuka Amelie is poorly > > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 oh Lesley- for what its worth, my heart is with you. Keep your grace and your love around you like a precious shawl- I will keep you and Amelie and your family in my thoughts- " stable " is still a wonderful word amidst all the other disheartening elements- looking forward to a record breaking recovery- yuka Amelie is poorly > > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 oh Lesley- for what its worth, my heart is with you. Keep your grace and your love around you like a precious shawl- I will keep you and Amelie and your family in my thoughts- " stable " is still a wonderful word amidst all the other disheartening elements- looking forward to a record breaking recovery- yuka Amelie is poorly > > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Lesley, Sending lots of love and positive thoughts your way and hoping that today brings some brighter news. (((((Hugs))))) Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Lesley, Sending lots of love and positive thoughts your way and hoping that today brings some brighter news. (((((Hugs))))) Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Lesley, Sending lots of love and positive thoughts your way and hoping that today brings some brighter news. (((((Hugs))))) Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Lesley, I don't have anything memorable to say except that I am thinking of you all. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Lesley, I don't have anything memorable to say except that I am thinking of you all. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Lesley, I don't have anything memorable to say except that I am thinking of you all. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Lesley, know that we are all thinking of you and sending our best wishes for dear Amelie. Please give her a kiss from us and give yourself a hug, too. Lots of love, -- Weir kawfolks@... http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Oh, how I wish some of us could be there to hold you through this. Know that many arms are around you and your little one. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Oh, how I wish some of us could be there to hold you through this. Know that many arms are around you and your little one. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Oh, how I wish some of us could be there to hold you through this. Know that many arms are around you and your little one. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Positive thoughts and prayers are coming your way. I hope she gets over this chalenge quickly. She is a fighter. a --- 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 > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Positive thoughts and prayers are coming your way. I hope she gets over this chalenge quickly. She is a fighter. a --- 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 > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 LESLEY SENDING LOTS OF LOVE AND HUGS YOUR WAY FOR YOUR PRINCESS.... GOD GIVE HER STRENGTH TO MOVE ON TO THE NEXT STAGE IN LIFE... AS FOR THE PORTA CATH THEY ARE GREAT .. I KNOW OF A FEW CHILDREN OVER HERE THAT HAVE THEM AND THEIR PARENTS SWEAR BY THEM... LIFE HAS BEEN MUCH EASIER FOR THOSE CHILDREN... NICOLE XOXOOX HAYLEYS MUM AUSTRALIA > > 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 SENDING LOTS OF LOVE AND HUGS YOUR WAY FOR YOUR PRINCESS.... GOD GIVE HER STRENGTH TO MOVE ON TO THE NEXT STAGE IN LIFE... AS FOR THE PORTA CATH THEY ARE GREAT .. I KNOW OF A FEW CHILDREN OVER HERE THAT HAVE THEM AND THEIR PARENTS SWEAR BY THEM... LIFE HAS BEEN MUCH EASIER FOR THOSE CHILDREN... NICOLE XOXOOX HAYLEYS MUM AUSTRALIA > > 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 SENDING LOTS OF LOVE AND HUGS YOUR WAY FOR YOUR PRINCESS.... GOD GIVE HER STRENGTH TO MOVE ON TO THE NEXT STAGE IN LIFE... AS FOR THE PORTA CATH THEY ARE GREAT .. I KNOW OF A FEW CHILDREN OVER HERE THAT HAVE THEM AND THEIR PARENTS SWEAR BY THEM... LIFE HAS BEEN MUCH EASIER FOR THOSE CHILDREN... NICOLE XOXOOX HAYLEYS MUM AUSTRALIA > > 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 Lots of hugs your way. I'll be saying a special prayer for Amelie and all you tonight. Hang in there! We're all in this together! Don't feel alone. Big email hugs your way. > > > > 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Oh how I am hoping that Amelie get stronger and begins to heal. I am hoping for healing all round. Please continue to keep us posted. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
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