Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 hmmmm wat a great doctor keep him for me lol i think ive had caths in veins to fix clotting after central lines its helped me hugs elen > > Anyone have expierience with an infant heart cath and biopsy? > > We did not consent to the lung and muscle biopsy so the > pulmonologist has suggested a heart cath because he thinks it s the > heart and not the lungs that has kept her on the vent. > > The cardiologist looked through all of her records, including all > the " physician sheets " I gave them from the CHARGE manual. He has > come to the conclusion that Cedie would benefit from a heart cath. > He said he is not sure if it will tell us why she is on the vent but > he does think it will tell us why she has a thick left ventricle. > He thinks it will help diagnos her " heart defect " so that they can > more specifically treat it. (She has tried 4 different heart meds > for her odd blood pressures and heart rate) > I talked with him about my concerns about how GA has affected her in > the past (takes her longer than normal to recover). Unlike the > pulmonologist, he listened. He said he would discuss this with her > other doctors. He will also have anathesiologits consult, review her > records, and explore what they can do different for this procedure. > > Anyway, I was curious how other chargers have handled this procedure. > > Mock (mom to Dylan (5) and Cedie (9 mth old charger) > > > > > > > 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 April 7, 2006 Report Share Posted April 7, 2006 , I have not had experience with either for an infant. I do wish to share that the majority of our children take a longer time to recover than others. From our personal experience Patty almost always crashed or had breathing difficulties after surgery. She loved that tent as her body was dry too. It remained that way until she was about age 4 or 5 but she grew out of that. There has almost always been difficulty with anesthesia. It takes tons to put her out and then it takes forever to get out of her system. Recently that has been changing for the better too. She is taking less to be put out but I think that's because the surgeries are now few and far between. She also hates the mask and refuses it to this day. Instead they put her to sleep intravenously. She has smaller veins so they use smaller needles. All of those things help save time during the beginning of the procedures which save breathing time. They had really small special needles for her as once they stuck her over 30 times and ended up going through her jugular. Her other veins had collapsed. Right after that we told them never again and that it was three strikes and they are out. We go home and come back later. Please remember that Patty is 21 so medical advances have changed things for the better. Another thought, which biopsy is the least aggressive? I always go for the least aggressive first and only if that doesn't work then we move on. I will be keeping Ceide in my thoughts until you get this all straightened out. Glad to hear you have a cardiologist listening to you. That's 1/2 the game. Let us know how it goes. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 bonnie i am posting to you alot tonight bu tlike allwyas you r saying things that stir me up whichis nto a bad thing but its great i love it but on those small veins i had it to with me they just put lines in and it worked wonders for me they use the three to five and thats it for me to acutaly they say three to five then anasthetic reg come my veins r curly to the other day foer zymeta the lady she had to dig real hard for it hugs ellen > > , > > I have not had experience with either for an infant. > > I do wish to share that the majority of our children take a longer time to > recover than others. > > From our personal experience Patty almost always crashed or had breathing > difficulties after surgery. She loved that tent as her body was dry > too. It > remained that way until she was about age 4 or 5 but she grew out of that. > > There has almost always been difficulty with anesthesia. It takes tons to > put her out and then it takes forever to get out of her system. Recently > that > has been changing for the better too. She is taking less to be put out > but I > think that's because the surgeries are now few and far between. She also > hates > the mask and refuses it to this day. Instead they put her to sleep > intravenously. She has smaller veins so they use smaller needles. All of > those things > help save time during the beginning of the procedures which save breathing > time. > > They had really small special needles for her as once they stuck her over > 30 > times and ended up going through her jugular. Her other veins had > collapsed. > Right after that we told them never again and that it was three strikes > and > they are out. We go home and come back later. > > Please remember that Patty is 21 so medical advances have changed things > for > the better. > > Another thought, which biopsy is the least aggressive? I always go for > the > least aggressive first and only if that doesn't work then we move on. > > I will be keeping Ceide in my thoughts until you get this all straightened > out. Glad to hear you have a cardiologist listening to you. That's 1/2 > the > game. > > Let us know how it goes. > > > Bonnie, Mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 bonnie i am posting to you alot tonight bu tlike allwyas you r saying things that stir me up whichis nto a bad thing but its great i love it but on those small veins i had it to with me they just put lines in and it worked wonders for me they use the three to five and thats it for me to acutaly they say three to five then anasthetic reg come my veins r curly to the other day foer zymeta the lady she had to dig real hard for it hugs ellen > > , > > I have not had experience with either for an infant. > > I do wish to share that the majority of our children take a longer time to > recover than others. > > From our personal experience Patty almost always crashed or had breathing > difficulties after surgery. She loved that tent as her body was dry > too. It > remained that way until she was about age 4 or 5 but she grew out of that. > > There has almost always been difficulty with anesthesia. It takes tons to > put her out and then it takes forever to get out of her system. Recently > that > has been changing for the better too. She is taking less to be put out > but I > think that's because the surgeries are now few and far between. She also > hates > the mask and refuses it to this day. Instead they put her to sleep > intravenously. She has smaller veins so they use smaller needles. All of > those things > help save time during the beginning of the procedures which save breathing > time. > > They had really small special needles for her as once they stuck her over > 30 > times and ended up going through her jugular. Her other veins had > collapsed. > Right after that we told them never again and that it was three strikes > and > they are out. We go home and come back later. > > Please remember that Patty is 21 so medical advances have changed things > for > the better. > > Another thought, which biopsy is the least aggressive? I always go for > the > least aggressive first and only if that doesn't work then we move on. > > I will be keeping Ceide in my thoughts until you get this all straightened > out. Glad to hear you have a cardiologist listening to you. That's 1/2 > the > game. > > Let us know how it goes. > > > Bonnie, Mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 My daughter has a pre-op cardiac cath in 2004. They did t his to help plan, check things out before a valve job. She handled it fine but had been healthy for a long time prior to the cath (not on the vent, sick at all, etc). > > Anyone have expierience with an infant heart cath and biopsy? > > We did not consent to the lung and muscle biopsy so the > pulmonologist has suggested a heart cath because he thinks it s the > heart and not the lungs that has kept her on the vent. > > The cardiologist looked through all of her records, including all > the " physician sheets " I gave them from the CHARGE manual. He has > come to the conclusion that Cedie would benefit from a heart cath. > He said he is not sure if it will tell us why she is on the vent but > he does think it will tell us why she has a thick left ventricle. > He thinks it will help diagnos her " heart defect " so that they can > more specifically treat it. (She has tried 4 different heart meds > for her odd blood pressures and heart rate) > I talked with him about my concerns about how GA has affected her in > the past (takes her longer than normal to recover). Unlike the > pulmonologist, he listened. He said he would discuss this with her > other doctors. He will also have anathesiologits consult, review her > records, and explore what they can do different for this procedure. > > Anyway, I was curious how other chargers have handled this procedure. > > Mock (mom to Dylan (5) and Cedie (9 mth old charger) > > > > > > > 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 April 7, 2006 Report Share Posted April 7, 2006 My daughter has a pre-op cardiac cath in 2004. They did t his to help plan, check things out before a valve job. She handled it fine but had been healthy for a long time prior to the cath (not on the vent, sick at all, etc). > > Anyone have expierience with an infant heart cath and biopsy? > > We did not consent to the lung and muscle biopsy so the > pulmonologist has suggested a heart cath because he thinks it s the > heart and not the lungs that has kept her on the vent. > > The cardiologist looked through all of her records, including all > the " physician sheets " I gave them from the CHARGE manual. He has > come to the conclusion that Cedie would benefit from a heart cath. > He said he is not sure if it will tell us why she is on the vent but > he does think it will tell us why she has a thick left ventricle. > He thinks it will help diagnos her " heart defect " so that they can > more specifically treat it. (She has tried 4 different heart meds > for her odd blood pressures and heart rate) > I talked with him about my concerns about how GA has affected her in > the past (takes her longer than normal to recover). Unlike the > pulmonologist, he listened. He said he would discuss this with her > other doctors. He will also have anathesiologits consult, review her > records, and explore what they can do different for this procedure. > > Anyway, I was curious how other chargers have handled this procedure. > > Mock (mom to Dylan (5) and Cedie (9 mth old charger) > > > > > > > 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 April 7, 2006 Report Share Posted April 7, 2006 My daughter has a pre-op cardiac cath in 2004. They did t his to help plan, check things out before a valve job. She handled it fine but had been healthy for a long time prior to the cath (not on the vent, sick at all, etc). > > Anyone have expierience with an infant heart cath and biopsy? > > We did not consent to the lung and muscle biopsy so the > pulmonologist has suggested a heart cath because he thinks it s the > heart and not the lungs that has kept her on the vent. > > The cardiologist looked through all of her records, including all > the " physician sheets " I gave them from the CHARGE manual. He has > come to the conclusion that Cedie would benefit from a heart cath. > He said he is not sure if it will tell us why she is on the vent but > he does think it will tell us why she has a thick left ventricle. > He thinks it will help diagnos her " heart defect " so that they can > more specifically treat it. (She has tried 4 different heart meds > for her odd blood pressures and heart rate) > I talked with him about my concerns about how GA has affected her in > the past (takes her longer than normal to recover). Unlike the > pulmonologist, he listened. He said he would discuss this with her > other doctors. He will also have anathesiologits consult, review her > records, and explore what they can do different for this procedure. > > Anyway, I was curious how other chargers have handled this procedure. > > Mock (mom to Dylan (5) and Cedie (9 mth old charger) > > > > > > > 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 April 7, 2006 Report Share Posted April 7, 2006 ay lisa me and kenedy r on msn now so how can u be typing on here jsut wondering lol > > My daughter has a pre-op cardiac cath in 2004. They did t his to help > plan, > check things out before a valve job. She handled it fine but had been > healthy for a long time prior to the cath (not on the vent, sick at all, > etc). > > > > > > > > Anyone have expierience with an infant heart cath and biopsy? > > > > We did not consent to the lung and muscle biopsy so the > > pulmonologist has suggested a heart cath because he thinks it s the > > heart and not the lungs that has kept her on the vent. > > > > The cardiologist looked through all of her records, including all > > the " physician sheets " I gave them from the CHARGE manual. He has > > come to the conclusion that Cedie would benefit from a heart cath. > > He said he is not sure if it will tell us why she is on the vent but > > he does think it will tell us why she has a thick left ventricle. > > He thinks it will help diagnos her " heart defect " so that they can > > more specifically treat it. (She has tried 4 different heart meds > > for her odd blood pressures and heart rate) > > I talked with him about my concerns about how GA has affected her in > > the past (takes her longer than normal to recover). Unlike the > > pulmonologist, he listened. He said he would discuss this with her > > other doctors. He will also have anathesiologits consult, review her > > records, and explore what they can do different for this procedure. > > > > Anyway, I was curious how other chargers have handled this procedure. > > > > Mock (mom to Dylan (5) and Cedie (9 mth old charger) > > > > > > > > > > > > > > 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 April 7, 2006 Report Share Posted April 7, 2006 I too hate the mask. I always have to be put to sleep intravenously. Im also a small veins person. Hey does patty's legs " fall asleep " get numb when she sits cross leged? I do. it really hurts too. Chantelle > > . She also hates > the mask and refuses it to this day. Instead they put her to sleep > intravenously. She has smaller veins so they use smaller needles. All of > those things > help save time during the beginning of the procedures which save breathing > time. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 I too hate the mask. I always have to be put to sleep intravenously. Im also a small veins person. Hey does patty's legs " fall asleep " get numb when she sits cross leged? I do. it really hurts too. Chantelle > > . She also hates > the mask and refuses it to this day. Instead they put her to sleep > intravenously. She has smaller veins so they use smaller needles. All of > those things > help save time during the beginning of the procedures which save breathing > time. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 I too hate the mask. I always have to be put to sleep intravenously. Im also a small veins person. Hey does patty's legs " fall asleep " get numb when she sits cross leged? I do. it really hurts too. Chantelle > > . She also hates > the mask and refuses it to this day. Instead they put her to sleep > intravenously. She has smaller veins so they use smaller needles. All of > those things > help save time during the beginning of the procedures which save breathing > time. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 Ellen, they have more then one computer and im guessing that they have cable or at least dsl internet so that both computers can be on line at the same time. Chantelle > > ay lisa me and kenedy r on msn now so how can u be typing on here jsut > wondering lol > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 Ellen, they have more then one computer and im guessing that they have cable or at least dsl internet so that both computers can be on line at the same time. Chantelle > > ay lisa me and kenedy r on msn now so how can u be typing on here jsut > wondering lol > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 Ellen, we have 3 computers in this house all on a network (we can talk to each other via computers, and all are on the Internet ). > > ay lisa me and kenedy r on msn now so how can u be typing on here jsut > wondering lol > > Quote Link to comment Share on other sites More sharing options...
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