Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Perhaps one question might be - how will her treatment change by any information gained from the procedures? How does that offset the risk of anesthesia and the long time it takes her body to recover from it? You also might want to ask the doctor and yourself best and worse case scenario if you take her home on the vent now and do no more tests and what is best and worse case scenario if you do the procedures. Once you have that information you have to weigh that information against your instinct about what is right for your daughter. On the telling the doctor no, I think you tell him just what you told us - if he doesn't listen or answer the questions above, you tell one of your favorite nurses and you have them put it in her chart that you will not sign the consent until you get the answers to these questions. Kim L > So, I was sooo excited yesterday when I caught up with Cedie's > cardiologist while I was visiting her. He said that the hole she had > was gone and that her PDA was so tiny that it didn't bear worrying. > He did say that her enlarged heart was abnormal but that he had seen > much worse and he was positive that her heart was NOT the cause of > her being on the vent. He felt confident that she does not need a > cardiac cath at this time, as it would not change her treatment (she > takes Noravask (sp?)) and it would not tell them anything the echos > haven't already said. > We were under the impression that if the cardiologist cleared her > then we could look at going home. > Well, the Pulmonologist decided today that he will not discharge > Cedie without a reason for her being on the vent. He " ordered " a lung > biopsy as well as a muscle biopsy. Luckily one of our fav nurses was > there today and she told him that he was going to have to seriously > talk to us first before we would give permission. > Here's our stance- Cedie will be 9 months old on the 16th and she has > only spent 6 of those days outside of a hospital. Everytime we put > her through sedation and any kind of procedure it takes her a LONG > time to recover. We got PE tubes 3 weeks ago and she, just this week, > is starting to be back to where she was pre-op. It took 2 months to > get over the g-tube/fundo surgery and 6 months for the trach... > We want to give the baby a chance to be left alone and to grow. We > want to see how much better she can get on her own if just given time > to be. > My problem is that although I know I am her mom and I can say no, I > am torn about making the wrong decision. I think to myself that they > (the dr) are the ones who should know what's best for her health but > on the other hand I really feel that now is not the time to do such > invasive procedures in order to " rule " out who knows what. How do I > tell drs NO? > We have a care meeting set up to talk with them on Tuesday morning. I > am really stressing over this issue meanwhile. > Any advice???????? > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > 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 > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 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 11, 2006 Report Share Posted March 11, 2006 Perhaps one question might be - how will her treatment change by any information gained from the procedures? How does that offset the risk of anesthesia and the long time it takes her body to recover from it? You also might want to ask the doctor and yourself best and worse case scenario if you take her home on the vent now and do no more tests and what is best and worse case scenario if you do the procedures. Once you have that information you have to weigh that information against your instinct about what is right for your daughter. On the telling the doctor no, I think you tell him just what you told us - if he doesn't listen or answer the questions above, you tell one of your favorite nurses and you have them put it in her chart that you will not sign the consent until you get the answers to these questions. Kim L > So, I was sooo excited yesterday when I caught up with Cedie's > cardiologist while I was visiting her. He said that the hole she had > was gone and that her PDA was so tiny that it didn't bear worrying. > He did say that her enlarged heart was abnormal but that he had seen > much worse and he was positive that her heart was NOT the cause of > her being on the vent. He felt confident that she does not need a > cardiac cath at this time, as it would not change her treatment (she > takes Noravask (sp?)) and it would not tell them anything the echos > haven't already said. > We were under the impression that if the cardiologist cleared her > then we could look at going home. > Well, the Pulmonologist decided today that he will not discharge > Cedie without a reason for her being on the vent. He " ordered " a lung > biopsy as well as a muscle biopsy. Luckily one of our fav nurses was > there today and she told him that he was going to have to seriously > talk to us first before we would give permission. > Here's our stance- Cedie will be 9 months old on the 16th and she has > only spent 6 of those days outside of a hospital. Everytime we put > her through sedation and any kind of procedure it takes her a LONG > time to recover. We got PE tubes 3 weeks ago and she, just this week, > is starting to be back to where she was pre-op. It took 2 months to > get over the g-tube/fundo surgery and 6 months for the trach... > We want to give the baby a chance to be left alone and to grow. We > want to see how much better she can get on her own if just given time > to be. > My problem is that although I know I am her mom and I can say no, I > am torn about making the wrong decision. I think to myself that they > (the dr) are the ones who should know what's best for her health but > on the other hand I really feel that now is not the time to do such > invasive procedures in order to " rule " out who knows what. How do I > tell drs NO? > We have a care meeting set up to talk with them on Tuesday morning. I > am really stressing over this issue meanwhile. > Any advice???????? > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > 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 > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 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 11, 2006 Report Share Posted March 11, 2006 Perhaps one question might be - how will her treatment change by any information gained from the procedures? How does that offset the risk of anesthesia and the long time it takes her body to recover from it? You also might want to ask the doctor and yourself best and worse case scenario if you take her home on the vent now and do no more tests and what is best and worse case scenario if you do the procedures. Once you have that information you have to weigh that information against your instinct about what is right for your daughter. On the telling the doctor no, I think you tell him just what you told us - if he doesn't listen or answer the questions above, you tell one of your favorite nurses and you have them put it in her chart that you will not sign the consent until you get the answers to these questions. Kim L > So, I was sooo excited yesterday when I caught up with Cedie's > cardiologist while I was visiting her. He said that the hole she had > was gone and that her PDA was so tiny that it didn't bear worrying. > He did say that her enlarged heart was abnormal but that he had seen > much worse and he was positive that her heart was NOT the cause of > her being on the vent. He felt confident that she does not need a > cardiac cath at this time, as it would not change her treatment (she > takes Noravask (sp?)) and it would not tell them anything the echos > haven't already said. > We were under the impression that if the cardiologist cleared her > then we could look at going home. > Well, the Pulmonologist decided today that he will not discharge > Cedie without a reason for her being on the vent. He " ordered " a lung > biopsy as well as a muscle biopsy. Luckily one of our fav nurses was > there today and she told him that he was going to have to seriously > talk to us first before we would give permission. > Here's our stance- Cedie will be 9 months old on the 16th and she has > only spent 6 of those days outside of a hospital. Everytime we put > her through sedation and any kind of procedure it takes her a LONG > time to recover. We got PE tubes 3 weeks ago and she, just this week, > is starting to be back to where she was pre-op. It took 2 months to > get over the g-tube/fundo surgery and 6 months for the trach... > We want to give the baby a chance to be left alone and to grow. We > want to see how much better she can get on her own if just given time > to be. > My problem is that although I know I am her mom and I can say no, I > am torn about making the wrong decision. I think to myself that they > (the dr) are the ones who should know what's best for her health but > on the other hand I really feel that now is not the time to do such > invasive procedures in order to " rule " out who knows what. How do I > tell drs NO? > We have a care meeting set up to talk with them on Tuesday morning. I > am really stressing over this issue meanwhile. > Any advice???????? > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > 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 > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 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 11, 2006 Report Share Posted March 11, 2006 You email says a lot as to why you can say " no " , however, sometimes docs have good reasons for wanting to do something, but they don't explain it to you, they just assume you are going to listen because they are the docs--so if he has a good explanation, then great--otherwise, find a middle ground that is best for Cedie. Also, once you question the process, all of a sudden, you are listed as an involved mom who requires more info--that is a good thing--be confident and tell them you are your daughters " advocate " and that you want what's best for her!!! Good luck! B > > So, I was sooo excited yesterday when I caught up with Cedie's > cardiologist while I was visiting her. He said that the hole she had > was gone and that her PDA was so tiny that it didn't bear worrying. > He did say that her enlarged heart was abnormal but that he had seen > much worse and he was positive that her heart was NOT the cause of > her being on the vent. He felt confident that she does not need a > cardiac cath at this time, as it would not change her treatment (she > takes Noravask (sp?)) and it would not tell them anything the echos > haven't already said. > We were under the impression that if the cardiologist cleared her > then we could look at going home. > Well, the Pulmonologist decided today that he will not discharge > Cedie without a reason for her being on the vent. He " ordered " a lung > biopsy as well as a muscle biopsy. Luckily one of our fav nurses was > there today and she told him that he was going to have to seriously > talk to us first before we would give permission. > Here's our stance- Cedie will be 9 months old on the 16th and she has > only spent 6 of those days outside of a hospital. Everytime we put > her through sedation and any kind of procedure it takes her a LONG > time to recover. We got PE tubes 3 weeks ago and she, just this week, > is starting to be back to where she was pre-op. It took 2 months to > get over the g-tube/fundo surgery and 6 months for the trach... > We want to give the baby a chance to be left alone and to grow. We > want to see how much better she can get on her own if just given time > to be. > My problem is that although I know I am her mom and I can say no, I > am torn about making the wrong decision. I think to myself that they > (the dr) are the ones who should know what's best for her health but > on the other hand I really feel that now is not the time to do such > invasive procedures in order to " rule " out who knows what. How do I > tell drs NO? > We have a care meeting set up to talk with them on Tuesday morning. I > am really stressing over this issue meanwhile. > Any advice???????? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 michelle ur right sometimexs i think they forget that we arent professionals like themthey forget that we watn to have them around to they forget abvout how the parients and parents feel ive had ones like that and ive had soem great ones to sure they r good and they like u want wats best for her coz if they dotn she migth end up back in hugs ellen > > You email says a lot as to why you can say " no " , however, sometimes > docs have good reasons for wanting to do something, but they don't > explain it to you, they just assume you are going to listen because > they are the docs--so if he has a good explanation, then > great--otherwise, find a middle ground that is best for Cedie. Also, > once you question the process, all of a sudden, you are listed as an > involved mom who requires more info--that is a good thing--be > confident and tell them you are your daughters " advocate " and that you > want what's best for her!!! Good luck! > > B > > > > > > So, I was sooo excited yesterday when I caught up with Cedie's > > cardiologist while I was visiting her. He said that the hole she had > > was gone and that her PDA was so tiny that it didn't bear worrying. > > He did say that her enlarged heart was abnormal but that he had seen > > much worse and he was positive that her heart was NOT the cause of > > her being on the vent. He felt confident that she does not need a > > cardiac cath at this time, as it would not change her treatment (she > > takes Noravask (sp?)) and it would not tell them anything the echos > > haven't already said. > > We were under the impression that if the cardiologist cleared her > > then we could look at going home. > > Well, the Pulmonologist decided today that he will not discharge > > Cedie without a reason for her being on the vent. He " ordered " a lung > > biopsy as well as a muscle biopsy. Luckily one of our fav nurses was > > there today and she told him that he was going to have to seriously > > talk to us first before we would give permission. > > Here's our stance- Cedie will be 9 months old on the 16th and she has > > only spent 6 of those days outside of a hospital. Everytime we put > > her through sedation and any kind of procedure it takes her a LONG > > time to recover. We got PE tubes 3 weeks ago and she, just this week, > > is starting to be back to where she was pre-op. It took 2 months to > > get over the g-tube/fundo surgery and 6 months for the trach... > > We want to give the baby a chance to be left alone and to grow. We > > want to see how much better she can get on her own if just given time > > to be. > > My problem is that although I know I am her mom and I can say no, I > > am torn about making the wrong decision. I think to myself that they > > (the dr) are the ones who should know what's best for her health but > > on the other hand I really feel that now is not the time to do such > > invasive procedures in order to " rule " out who knows what. How do I > > tell drs NO? > > We have a care meeting set up to talk with them on Tuesday morning. I > > am really stressing over this issue meanwhile. > > Any advice???????? > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > 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 > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 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 12, 2006 Report Share Posted March 12, 2006 michelle ur right sometimexs i think they forget that we arent professionals like themthey forget that we watn to have them around to they forget abvout how the parients and parents feel ive had ones like that and ive had soem great ones to sure they r good and they like u want wats best for her coz if they dotn she migth end up back in hugs ellen > > You email says a lot as to why you can say " no " , however, sometimes > docs have good reasons for wanting to do something, but they don't > explain it to you, they just assume you are going to listen because > they are the docs--so if he has a good explanation, then > great--otherwise, find a middle ground that is best for Cedie. Also, > once you question the process, all of a sudden, you are listed as an > involved mom who requires more info--that is a good thing--be > confident and tell them you are your daughters " advocate " and that you > want what's best for her!!! Good luck! > > B > > > > > > So, I was sooo excited yesterday when I caught up with Cedie's > > cardiologist while I was visiting her. He said that the hole she had > > was gone and that her PDA was so tiny that it didn't bear worrying. > > He did say that her enlarged heart was abnormal but that he had seen > > much worse and he was positive that her heart was NOT the cause of > > her being on the vent. He felt confident that she does not need a > > cardiac cath at this time, as it would not change her treatment (she > > takes Noravask (sp?)) and it would not tell them anything the echos > > haven't already said. > > We were under the impression that if the cardiologist cleared her > > then we could look at going home. > > Well, the Pulmonologist decided today that he will not discharge > > Cedie without a reason for her being on the vent. He " ordered " a lung > > biopsy as well as a muscle biopsy. Luckily one of our fav nurses was > > there today and she told him that he was going to have to seriously > > talk to us first before we would give permission. > > Here's our stance- Cedie will be 9 months old on the 16th and she has > > only spent 6 of those days outside of a hospital. Everytime we put > > her through sedation and any kind of procedure it takes her a LONG > > time to recover. We got PE tubes 3 weeks ago and she, just this week, > > is starting to be back to where she was pre-op. It took 2 months to > > get over the g-tube/fundo surgery and 6 months for the trach... > > We want to give the baby a chance to be left alone and to grow. We > > want to see how much better she can get on her own if just given time > > to be. > > My problem is that although I know I am her mom and I can say no, I > > am torn about making the wrong decision. I think to myself that they > > (the dr) are the ones who should know what's best for her health but > > on the other hand I really feel that now is not the time to do such > > invasive procedures in order to " rule " out who knows what. How do I > > tell drs NO? > > We have a care meeting set up to talk with them on Tuesday morning. I > > am really stressing over this issue meanwhile. > > Any advice???????? > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > 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 > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 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 12, 2006 Report Share Posted March 12, 2006 michelle ur right sometimexs i think they forget that we arent professionals like themthey forget that we watn to have them around to they forget abvout how the parients and parents feel ive had ones like that and ive had soem great ones to sure they r good and they like u want wats best for her coz if they dotn she migth end up back in hugs ellen > > You email says a lot as to why you can say " no " , however, sometimes > docs have good reasons for wanting to do something, but they don't > explain it to you, they just assume you are going to listen because > they are the docs--so if he has a good explanation, then > great--otherwise, find a middle ground that is best for Cedie. Also, > once you question the process, all of a sudden, you are listed as an > involved mom who requires more info--that is a good thing--be > confident and tell them you are your daughters " advocate " and that you > want what's best for her!!! Good luck! > > B > > > > > > So, I was sooo excited yesterday when I caught up with Cedie's > > cardiologist while I was visiting her. He said that the hole she had > > was gone and that her PDA was so tiny that it didn't bear worrying. > > He did say that her enlarged heart was abnormal but that he had seen > > much worse and he was positive that her heart was NOT the cause of > > her being on the vent. He felt confident that she does not need a > > cardiac cath at this time, as it would not change her treatment (she > > takes Noravask (sp?)) and it would not tell them anything the echos > > haven't already said. > > We were under the impression that if the cardiologist cleared her > > then we could look at going home. > > Well, the Pulmonologist decided today that he will not discharge > > Cedie without a reason for her being on the vent. He " ordered " a lung > > biopsy as well as a muscle biopsy. Luckily one of our fav nurses was > > there today and she told him that he was going to have to seriously > > talk to us first before we would give permission. > > Here's our stance- Cedie will be 9 months old on the 16th and she has > > only spent 6 of those days outside of a hospital. Everytime we put > > her through sedation and any kind of procedure it takes her a LONG > > time to recover. We got PE tubes 3 weeks ago and she, just this week, > > is starting to be back to where she was pre-op. It took 2 months to > > get over the g-tube/fundo surgery and 6 months for the trach... > > We want to give the baby a chance to be left alone and to grow. We > > want to see how much better she can get on her own if just given time > > to be. > > My problem is that although I know I am her mom and I can say no, I > > am torn about making the wrong decision. I think to myself that they > > (the dr) are the ones who should know what's best for her health but > > on the other hand I really feel that now is not the time to do such > > invasive procedures in order to " rule " out who knows what. How do I > > tell drs NO? > > We have a care meeting set up to talk with them on Tuesday morning. I > > am really stressing over this issue meanwhile. > > Any advice???????? > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > 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 > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 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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