Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 Hello all, Sorry for the mass email, but my little queen is about to wake up and she is always CRANKY waking up from anesthetic. Good news is that the cath went well and she came out of things fine. Bad news is things are looking a little more complicated than we first thought. They thought they would have to remove some tissue, do some stretching to open things up where it is narrowed, and have discovered they may have to replace an entire valve with either a mechanical valve or a valve from the right side of her heart. Surgery is being postponed a week as well for more anesthetic allergy testing. Looks like we'll be in Toronto even longer than first anticipated. All in all, we're doing okay, trying like buggers to get into Mc House (we just have to keep calling every day) and taking it a day at a time. In usual fashion, Kennedy is doing better than the three of us put together. Anyway, I have discovered these free for parents computers with net-access here at Sick Kids so I will check email daily. Thanks for all your thoughts.... & Graeme Weir Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Ahhh yes I wanted to mention those computers. Best of luck on the surgery. I want to come visit you guys soon! Hey call me or give me your number so I can call you ok! Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Prayers and Hugs to Kennedy and everyone. Lynn Kennedy's Cardiac Cath Hello all, Sorry for the mass email, but my little queen is about to wake up and she is always CRANKY waking up from anesthetic. Good news is that the cath went well and she came out of things fine. Bad news is things are looking a little more complicated than we first thought. They thought they would have to remove some tissue, do some stretching to open things up where it is narrowed, and have discovered they may have to replace an entire valve with either a mechanical valve or a valve from the right side of her heart. Surgery is being postponed a week as well for more anesthetic allergy testing. Looks like we'll be in Toronto even longer than first anticipated. All in all, we're doing okay, trying like buggers to get into Mc House (we just have to keep calling every day) and taking it a day at a time. In usual fashion, Kennedy is doing better than the three of us put together. Anyway, I have discovered these free for parents computers with net-access here at Sick Kids so I will check email daily. Thanks for all your thoughts.... & Graeme Weir 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 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Hi , Sorry to hear that things are more complicated than first thought Is it the Ross-Konno procedure they will be doing? I'll be keeping Kennedy in my thoughts and praying for a positive outcome. Hugs Elaine, mum to Elise (11yrs) & Jack (6yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 , I'm keeping you all still in my prayers. Bonnie. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 lisa and graeme and of course sweet kennedy, glad to hear she came through it well, ssorry to hear more complicated than you had hoped. hugs and prayers going your way and good thoughts about getting into r. mcd's maria and the guys Kennedy's Cardiac Cath > Hello all, > Sorry for the mass email, but my little queen is about to wake up and she is always CRANKY waking up from anesthetic. Good news is that the cath went well and she came out of things fine. Bad news is things are looking a little more complicated than we first thought. They thought they would have to remove some tissue, do some stretching to open things up where it is narrowed, and have discovered they may have to replace an entire valve with either a mechanical valve or a valve from the right side of her heart. Surgery is being postponed a week as well for more anesthetic allergy testing. Looks like we'll be in Toronto even longer than first anticipated. All in all, we're doing okay, trying like buggers to get into Mc House (we just have to keep calling every day) and taking it a day at a time. In usual fashion, Kennedy is doing better than the three of us put together. > > Anyway, I have discovered these free for parents computers with net-access here at Sick Kids so I will check email daily. Thanks for all your thoughts.... > > & Graeme Weir > > > > > 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 > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 , Sorry to hear that things have gotten a bit more complicated. Just hang in there and know that our thoughts and prayers remain with you in this time. Kennedy is a fighter and she'll fight through this also. mom to Vicky charger 41/2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 > Ahhh yes I wanted to mention those computers. Best of luck on the > surgery. I want to come visit you guys soon! Hey call me or give me > your number so I can call you ok! > > > Chantelle Chantelle, Maybe it was something to do with me being logged into the CHARGE yahoogroups web site and reading messages there on the public computers at the hospital that caused something to go wrong... who knows? I hope it doesn't happen again... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 > Ahhh yes I wanted to mention those computers. Best of luck on the > surgery. I want to come visit you guys soon! Hey call me or give me > your number so I can call you ok! > > > Chantelle Chantelle, Maybe it was something to do with me being logged into the CHARGE yahoogroups web site and reading messages there on the public computers at the hospital that caused something to go wrong... who knows? I hope it doesn't happen again... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Thanks Lynn, everyone's kind thoughts mean so much. > Prayers and Hugs to Kennedy and everyone. > Lynn > Kennedy's Cardiac Cath > > > Hello all, > Sorry for the mass email, but my little queen is about to wake up and she is always CRANKY waking up from anesthetic. Good news is that the cath went well and she came out of things fine. Bad news is things are looking a little more complicated than we first thought. They thought they would have to remove some tissue, do some stretching to open things up where it is narrowed, and have discovered they may have to replace an entire valve with either a mechanical valve or a valve from the right side of her heart. Surgery is being postponed a week as well for more anesthetic allergy testing. Looks like we'll be in Toronto even longer than first anticipated. All in all, we're doing okay, trying like buggers to get into Mc House (we just have to keep calling every day) and taking it a day at a time. In usual fashion, Kennedy is doing better than the three of us put together. > > Anyway, I have discovered these free for parents computers with net-access here at Sick Kids so I will check email daily. Thanks for all your thoughts.... > > & Graeme Weir > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@c... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@c... Thank you! > > > > > ------------------------------------------------------------------- ----------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Thanks Lynn, everyone's kind thoughts mean so much. > Prayers and Hugs to Kennedy and everyone. > Lynn > Kennedy's Cardiac Cath > > > Hello all, > Sorry for the mass email, but my little queen is about to wake up and she is always CRANKY waking up from anesthetic. Good news is that the cath went well and she came out of things fine. Bad news is things are looking a little more complicated than we first thought. They thought they would have to remove some tissue, do some stretching to open things up where it is narrowed, and have discovered they may have to replace an entire valve with either a mechanical valve or a valve from the right side of her heart. Surgery is being postponed a week as well for more anesthetic allergy testing. Looks like we'll be in Toronto even longer than first anticipated. All in all, we're doing okay, trying like buggers to get into Mc House (we just have to keep calling every day) and taking it a day at a time. In usual fashion, Kennedy is doing better than the three of us put together. > > Anyway, I have discovered these free for parents computers with net-access here at Sick Kids so I will check email daily. Thanks for all your thoughts.... > > & Graeme Weir > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@c... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@c... Thank you! > > > > > ------------------------------------------------------------------- ----------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Thanks Bonnie, it means a lot... > , > > I'm keeping you all still in my prayers. > > Bonnie. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Elaine, Thanks, I'm not sure what the name of the procedure will be yet. We meet with the cardiologists, surgeons, anesthetic team, etc on Monday so that will give us a more concrete idea of where we are going with things, etc. I'll keep y'all posted... Hugs to all, > Hi , > Sorry to hear that things are more complicated than first thought : ( Is it > the Ross-Konno procedure they will be doing? > I'll be keeping Kennedy in my thoughts and praying for a positive outcome. > Hugs > > Elaine, mum to Elise (11yrs) & Jack (6yrs) CHaRGE > Scotland > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Elaine, Thanks, I'm not sure what the name of the procedure will be yet. We meet with the cardiologists, surgeons, anesthetic team, etc on Monday so that will give us a more concrete idea of where we are going with things, etc. I'll keep y'all posted... Hugs to all, > Hi , > Sorry to hear that things are more complicated than first thought : ( Is it > the Ross-Konno procedure they will be doing? > I'll be keeping Kennedy in my thoughts and praying for a positive outcome. > Hugs > > Elaine, mum to Elise (11yrs) & Jack (6yrs) CHaRGE > Scotland > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Thanks , the Delta is nice but the price at Mc's is quite a bit nicer...we were hoping to get i n there today as it was the weekend and we thought some people might be going home, but no luck... Call again tomorrow was the answer... Anyway, we had a fun day exploring Toronto. Might as well make the best of it! > lisa and graeme and of course sweet kennedy, > > glad to hear she came through it well, ssorry to hear more complicated than > you had hoped. hugs and prayers going your way and good thoughts about > getting into r. mcd's > > maria and the guys > Kennedy's Cardiac Cath > > > > Hello all, > > Sorry for the mass email, but my little queen is about to wake up and she > is always CRANKY waking up from anesthetic. Good news is that the cath went > well and she came out of things fine. Bad news is things are looking a > little more complicated than we first thought. They thought they would have > to remove some tissue, do some stretching to open things up where it is > narrowed, and have discovered they may have to replace an entire valve with > either a mechanical valve or a valve from the right side of her heart. > Surgery is being postponed a week as well for more anesthetic allergy > testing. Looks like we'll be in Toronto even longer than first anticipated. > All in all, we're doing okay, trying like buggers to get into > Mc House (we just have to keep calling every day) and taking it a day > at a time. In usual fashion, Kennedy is doing better than the three of us > put together. > > > > Anyway, I have discovered these free for parents computers with net-access > here at Sick Kids so I will check email daily. Thanks for all your > thoughts.... > > > > & Graeme Weir > > > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@c... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > 7th International > > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@c... Thank you! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Thanks , the Delta is nice but the price at Mc's is quite a bit nicer...we were hoping to get i n there today as it was the weekend and we thought some people might be going home, but no luck... Call again tomorrow was the answer... Anyway, we had a fun day exploring Toronto. Might as well make the best of it! > lisa and graeme and of course sweet kennedy, > > glad to hear she came through it well, ssorry to hear more complicated than > you had hoped. hugs and prayers going your way and good thoughts about > getting into r. mcd's > > maria and the guys > Kennedy's Cardiac Cath > > > > Hello all, > > Sorry for the mass email, but my little queen is about to wake up and she > is always CRANKY waking up from anesthetic. Good news is that the cath went > well and she came out of things fine. Bad news is things are looking a > little more complicated than we first thought. They thought they would have > to remove some tissue, do some stretching to open things up where it is > narrowed, and have discovered they may have to replace an entire valve with > either a mechanical valve or a valve from the right side of her heart. > Surgery is being postponed a week as well for more anesthetic allergy > testing. Looks like we'll be in Toronto even longer than first anticipated. > All in all, we're doing okay, trying like buggers to get into > Mc House (we just have to keep calling every day) and taking it a day > at a time. In usual fashion, Kennedy is doing better than the three of us > put together. > > > > Anyway, I have discovered these free for parents computers with net-access > here at Sick Kids so I will check email daily. Thanks for all your > thoughts.... > > > > & Graeme Weir > > > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@c... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > 7th International > > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@c... Thank you! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 that is so true, you would NEVER know today that this child had a cardiac cath (both groins used also, her whole " area " down there is black) yesterday, she's FULL OF IT today and they want us to keep her " quiet " for 5 or 6 days. I literally laughed when they said that to us... > , > Sorry to hear that things have gotten a bit more complicated. Just hang in there and know that our thoughts and prayers remain with you in this time. Kennedy is a fighter and she'll fight through this also. > > mom to Vicky charger 41/2 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2004 Report Share Posted March 20, 2004 , I WANT to get together with you! Give me a day (saturday, sunday, tuesday or wednesday) I will get to TO by train and meet up with you guys. The train its only 10 dollars and sick kids is walking distance from union station (well some would say no. but ive walked it SOOOOOO many times in my life, I know all the short cuts) I have something for Kennedy anyways Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 , Our prayers for Kennedy your little Queen, keep posting, so we are updated. Pushpa, grandma to Aman, son to Amrit+Poonam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2004 Report Share Posted March 22, 2004 Hey ...sorry i ddnt see this email until today....Kennedy is in my thoughts and prayers Belinda - -- In CHARGE , <gweir@n...> wrote: > Hello all, > Sorry for the mass email, but my little queen is about to wake up and she is always CRANKY waking up from anesthetic. Good news is that the cath went well and she came out of things fine. Bad news is things are looking a little more complicated than we first thought. They thought they would have to remove some tissue, do some stretching to open things up where it is narrowed, and have discovered they may have to replace an entire valve with either a mechanical valve or a valve from the right side of her heart. Surgery is being postponed a week as well for more anesthetic allergy testing. Looks like we'll be in Toronto even longer than first anticipated. All in all, we're doing okay, trying like buggers to get into Mc House (we just have to keep calling every day) and taking it a day at a time. In usual fashion, Kennedy is doing better than the three of us put together. > > Anyway, I have discovered these free for parents computers with net- access here at Sick Kids so I will check email daily. Thanks for all your thoughts.... > > & Graeme Weir Quote Link to comment Share on other sites More sharing options...
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