Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 - The decisions can be heart-wrenching. Even when we gather all the information, there are decisions that are simply no-win or no guarantees. I'm sorry you find yourself in this place. I hope your meeting goes well. My real hope, for all of us when we face this, is that we can find a decision that we can live with and be comfortable and at peace with -- even if we don't really like it. 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 May 4, 2006 Report Share Posted May 4, 2006 - The decisions can be heart-wrenching. Even when we gather all the information, there are decisions that are simply no-win or no guarantees. I'm sorry you find yourself in this place. I hope your meeting goes well. My real hope, for all of us when we face this, is that we can find a decision that we can live with and be comfortable and at peace with -- even if we don't really like it. 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 May 6, 2006 Report Share Posted May 6, 2006 I saw Cedie's pictures with her arm all wrapped up in a sling--poor baby. At least her spirits are up enough to want to suck her thumb. Wishing her a speedy recovery (and hope they saw what they needed to on that scan--doesn't look like there will be any more CTs with contrast for Cedie). Evan had an eventful day as well (It's on his web page, so I won't repeat here). But he is doing much better this evening--sats are back up and we are slowly lowering the O2 again. Hugs, (mom to Evan 9.5 mos) mockfamily814 wrote: Some of you may remember the discussion of the lung and muscle biopsy orders for Cedie back in March. I had a mtg with the pulmonologist that did not go well at all. He would not take the time to explain to us why we need to proceed with a these procedures. He was more certain that she needed the cath because he thought it was her heart. Any way, like I said yesterday, Cedie's cath showed that it is not her heart that has caused her vent dependence and/or her excess fluids that tend to build up on her lungs. So, her pulmonologist took the time yesterday to call me. He said that he and the cardiologist had a long discussion on Cedie's case. He said that although he knew we were hesitant on doing these procedures b/c of how far back they will set her, it has come down to a must. He said they have reached the " end of the diagnostic rope " . They can not think of any more tests. He has ordered a CT scan of her chest (last one was in Sept)for today. He said the heart biopsy results should be back on Friday. If they can not find any answers from these results then we are going to have to move forward with the biopsies. Because of the way she falls (she can be great one day, up to 20 hrs of CPAP, and the next day she is down, no CPAP, increased vent settings, sedation, etc)he can not send her home without some idea as to why this happens. We are obviously devastated. No one can tell us how these two surgeries will affect her because she has not handled any other procedure (except the cath) like most children. We do not know how long she will have to have the chest tube, the paralitics, or the sedations. However, we want what's best for her. It is so hard to make these kinds of decisions. We will meet with him on Sunday. I'll let you guys know. Mock- mom to Dylan and Cedie (10.5 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 May 6, 2006 Report Share Posted May 6, 2006 I saw Cedie's pictures with her arm all wrapped up in a sling--poor baby. At least her spirits are up enough to want to suck her thumb. Wishing her a speedy recovery (and hope they saw what they needed to on that scan--doesn't look like there will be any more CTs with contrast for Cedie). Evan had an eventful day as well (It's on his web page, so I won't repeat here). But he is doing much better this evening--sats are back up and we are slowly lowering the O2 again. Hugs, (mom to Evan 9.5 mos) mockfamily814 wrote: Some of you may remember the discussion of the lung and muscle biopsy orders for Cedie back in March. I had a mtg with the pulmonologist that did not go well at all. He would not take the time to explain to us why we need to proceed with a these procedures. He was more certain that she needed the cath because he thought it was her heart. Any way, like I said yesterday, Cedie's cath showed that it is not her heart that has caused her vent dependence and/or her excess fluids that tend to build up on her lungs. So, her pulmonologist took the time yesterday to call me. He said that he and the cardiologist had a long discussion on Cedie's case. He said that although he knew we were hesitant on doing these procedures b/c of how far back they will set her, it has come down to a must. He said they have reached the " end of the diagnostic rope " . They can not think of any more tests. He has ordered a CT scan of her chest (last one was in Sept)for today. He said the heart biopsy results should be back on Friday. If they can not find any answers from these results then we are going to have to move forward with the biopsies. Because of the way she falls (she can be great one day, up to 20 hrs of CPAP, and the next day she is down, no CPAP, increased vent settings, sedation, etc)he can not send her home without some idea as to why this happens. We are obviously devastated. No one can tell us how these two surgeries will affect her because she has not handled any other procedure (except the cath) like most children. We do not know how long she will have to have the chest tube, the paralitics, or the sedations. However, we want what's best for her. It is so hard to make these kinds of decisions. We will meet with him on Sunday. I'll let you guys know. Mock- mom to Dylan and Cedie (10.5 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 May 6, 2006 Report Share Posted May 6, 2006 I saw Cedie's pictures with her arm all wrapped up in a sling--poor baby. At least her spirits are up enough to want to suck her thumb. Wishing her a speedy recovery (and hope they saw what they needed to on that scan--doesn't look like there will be any more CTs with contrast for Cedie). Evan had an eventful day as well (It's on his web page, so I won't repeat here). But he is doing much better this evening--sats are back up and we are slowly lowering the O2 again. Hugs, (mom to Evan 9.5 mos) mockfamily814 wrote: Some of you may remember the discussion of the lung and muscle biopsy orders for Cedie back in March. I had a mtg with the pulmonologist that did not go well at all. He would not take the time to explain to us why we need to proceed with a these procedures. He was more certain that she needed the cath because he thought it was her heart. Any way, like I said yesterday, Cedie's cath showed that it is not her heart that has caused her vent dependence and/or her excess fluids that tend to build up on her lungs. So, her pulmonologist took the time yesterday to call me. He said that he and the cardiologist had a long discussion on Cedie's case. He said that although he knew we were hesitant on doing these procedures b/c of how far back they will set her, it has come down to a must. He said they have reached the " end of the diagnostic rope " . They can not think of any more tests. He has ordered a CT scan of her chest (last one was in Sept)for today. He said the heart biopsy results should be back on Friday. If they can not find any answers from these results then we are going to have to move forward with the biopsies. Because of the way she falls (she can be great one day, up to 20 hrs of CPAP, and the next day she is down, no CPAP, increased vent settings, sedation, etc)he can not send her home without some idea as to why this happens. We are obviously devastated. No one can tell us how these two surgeries will affect her because she has not handled any other procedure (except the cath) like most children. We do not know how long she will have to have the chest tube, the paralitics, or the sedations. However, we want what's best for her. It is so hard to make these kinds of decisions. We will meet with him on Sunday. I'll let you guys know. Mock- mom to Dylan and Cedie (10.5 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 May 7, 2006 Report Share Posted May 7, 2006 sometiems i reckon you need to go with the drs even if you heart isnt in it c oz they r trying the best > > I saw Cedie's pictures with her arm all wrapped up in a sling--poor > baby. At least her spirits are up enough to want to suck her > thumb. Wishing her a speedy recovery (and hope they saw what they needed to > on that scan--doesn't look like there will be any more CTs with contrast for > Cedie). > > Evan had an eventful day as well (It's on his web page, so I won't repeat > here). But he is doing much better this evening--sats are back up and we > are slowly lowering the O2 again. > > Hugs, > (mom to Evan 9.5 mos) > > mockfamily814 wrote: > Some of you may remember the discussion of the lung and muscle > biopsy orders for Cedie back in March. I had a mtg with the > pulmonologist that did not go well at all. He would not take the > time to explain to us why we need to proceed with a these > procedures. He was more certain that she needed the cath because he > thought it was her heart. > Any way, like I said yesterday, Cedie's cath showed that it is not > her heart that has caused her vent dependence and/or her excess > fluids that tend to build up on her lungs. So, her pulmonologist > took the time yesterday to call me. He said that he and the > cardiologist had a long discussion on Cedie's case. He said that > although he knew we were hesitant on doing these procedures b/c of > how far back they will set her, it has come down to a must. He said > they have reached the " end of the diagnostic rope " . They can not > think of any more tests. He has ordered a CT scan of her chest > (last one was in Sept)for today. He said the heart biopsy results > should be back on Friday. If they can not find any answers from > these results then we are going to have to move forward with the > biopsies. Because of the way she falls (she can be great one day, > up to 20 hrs of CPAP, and the next day she is down, no CPAP, > increased vent settings, sedation, etc)he can not send her home > without some idea as to why this happens. > We are obviously devastated. No one can tell us how these two > surgeries will affect her because she has not handled any other > procedure (except the cath) like most children. We do not know how > long she will have to have the chest tube, the paralitics, or the > sedations. However, we want what's best for her. It is so hard to > make these kinds of decisions. > > We will meet with him on Sunday. I'll let you guys know. > > Mock- mom to Dylan and Cedie (10.5 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 May 7, 2006 Report Share Posted May 7, 2006 sometiems i reckon you need to go with the drs even if you heart isnt in it c oz they r trying the best > > I saw Cedie's pictures with her arm all wrapped up in a sling--poor > baby. At least her spirits are up enough to want to suck her > thumb. Wishing her a speedy recovery (and hope they saw what they needed to > on that scan--doesn't look like there will be any more CTs with contrast for > Cedie). > > Evan had an eventful day as well (It's on his web page, so I won't repeat > here). But he is doing much better this evening--sats are back up and we > are slowly lowering the O2 again. > > Hugs, > (mom to Evan 9.5 mos) > > mockfamily814 wrote: > Some of you may remember the discussion of the lung and muscle > biopsy orders for Cedie back in March. I had a mtg with the > pulmonologist that did not go well at all. He would not take the > time to explain to us why we need to proceed with a these > procedures. He was more certain that she needed the cath because he > thought it was her heart. > Any way, like I said yesterday, Cedie's cath showed that it is not > her heart that has caused her vent dependence and/or her excess > fluids that tend to build up on her lungs. So, her pulmonologist > took the time yesterday to call me. He said that he and the > cardiologist had a long discussion on Cedie's case. He said that > although he knew we were hesitant on doing these procedures b/c of > how far back they will set her, it has come down to a must. He said > they have reached the " end of the diagnostic rope " . They can not > think of any more tests. He has ordered a CT scan of her chest > (last one was in Sept)for today. He said the heart biopsy results > should be back on Friday. If they can not find any answers from > these results then we are going to have to move forward with the > biopsies. Because of the way she falls (she can be great one day, > up to 20 hrs of CPAP, and the next day she is down, no CPAP, > increased vent settings, sedation, etc)he can not send her home > without some idea as to why this happens. > We are obviously devastated. No one can tell us how these two > surgeries will affect her because she has not handled any other > procedure (except the cath) like most children. We do not know how > long she will have to have the chest tube, the paralitics, or the > sedations. However, we want what's best for her. It is so hard to > make these kinds of decisions. > > We will meet with him on Sunday. I'll let you guys know. > > Mock- mom to Dylan and Cedie (10.5 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 May 7, 2006 Report Share Posted May 7, 2006 sometiems i reckon you need to go with the drs even if you heart isnt in it c oz they r trying the best > > I saw Cedie's pictures with her arm all wrapped up in a sling--poor > baby. At least her spirits are up enough to want to suck her > thumb. Wishing her a speedy recovery (and hope they saw what they needed to > on that scan--doesn't look like there will be any more CTs with contrast for > Cedie). > > Evan had an eventful day as well (It's on his web page, so I won't repeat > here). But he is doing much better this evening--sats are back up and we > are slowly lowering the O2 again. > > Hugs, > (mom to Evan 9.5 mos) > > mockfamily814 wrote: > Some of you may remember the discussion of the lung and muscle > biopsy orders for Cedie back in March. I had a mtg with the > pulmonologist that did not go well at all. He would not take the > time to explain to us why we need to proceed with a these > procedures. He was more certain that she needed the cath because he > thought it was her heart. > Any way, like I said yesterday, Cedie's cath showed that it is not > her heart that has caused her vent dependence and/or her excess > fluids that tend to build up on her lungs. So, her pulmonologist > took the time yesterday to call me. He said that he and the > cardiologist had a long discussion on Cedie's case. He said that > although he knew we were hesitant on doing these procedures b/c of > how far back they will set her, it has come down to a must. He said > they have reached the " end of the diagnostic rope " . They can not > think of any more tests. He has ordered a CT scan of her chest > (last one was in Sept)for today. He said the heart biopsy results > should be back on Friday. If they can not find any answers from > these results then we are going to have to move forward with the > biopsies. Because of the way she falls (she can be great one day, > up to 20 hrs of CPAP, and the next day she is down, no CPAP, > increased vent settings, sedation, etc)he can not send her home > without some idea as to why this happens. > We are obviously devastated. No one can tell us how these two > surgeries will affect her because she has not handled any other > procedure (except the cath) like most children. We do not know how > long she will have to have the chest tube, the paralitics, or the > sedations. However, we want what's best for her. It is so hard to > make these kinds of decisions. > > We will meet with him on Sunday. I'll let you guys know. > > Mock- mom to Dylan and Cedie (10.5 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 May 12, 2006 Report Share Posted May 12, 2006 We hold you in our hearts with love and tender care to give you strength for whatever comes up and with the open request that all shall be well. With love, Yuka and Family Lung Biopsy Cedie is having the open lung biopsy today. Please pray for her, her surgeons, nurses, and family. I'll update you as soon as I can. Thanks Mock - mom to Dylan and Cedie www.cedielynn.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 certainly will > > Cedie is having the open lung biopsy today. Please pray for her, her > surgeons, nurses, and family. I'll update you as soon as I can. > > Thanks > > Mock - mom to Dylan and Cedie > www.cedielynn.blogspot.com > > > > > > > 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 May 12, 2006 Report Share Posted May 12, 2006 Thinking of Cedie today and always... 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 May 12, 2006 Report Share Posted May 12, 2006 Thinking of Cedie today and always... 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 May 12, 2006 Report Share Posted May 12, 2006 Thinking of cedie and you all. Hope all goes well. Flo > > Cedie is having the open lung biopsy today. Please pray for her, her > surgeons, nurses, and family. I'll update you as soon as I can. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Thinking of cedie and you all. Hope all goes well. Flo > > Cedie is having the open lung biopsy today. Please pray for her, her > surgeons, nurses, and family. I'll update you as soon as I can. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 , Consider it done! pam > Cedie is having the open lung biopsy today. Please pray for her, her > surgeons, nurses, and family. I'll update you as soon as I can. > > Thanks > > Mock - mom to Dylan and Cedie > www.cedielynn.blogspot.com > > > > > > > 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 May 12, 2006 Report Share Posted May 12, 2006 , Consider it done! pam > Cedie is having the open lung biopsy today. Please pray for her, her > surgeons, nurses, and family. I'll update you as soon as I can. > > Thanks > > Mock - mom to Dylan and Cedie > www.cedielynn.blogspot.com > > > > > > > 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 May 12, 2006 Report Share Posted May 12, 2006 , Consider it done! pam > Cedie is having the open lung biopsy today. Please pray for her, her > surgeons, nurses, and family. I'll update you as soon as I can. > > Thanks > > Mock - mom to Dylan and Cedie > www.cedielynn.blogspot.com > > > > > > > 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 May 12, 2006 Report Share Posted May 12, 2006 You can count on it. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 You can count on it. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 You can count on it. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2006 Report Share Posted May 13, 2006 My thoughts and prayer are with you and Cedie today! Hugs, Crystal and Eva > > Cedie is having the open lung biopsy today. Please pray for her, her > surgeons, nurses, and family. I'll update you as soon as I can. > > Thanks > > Mock - mom to Dylan and Cedie > www.cedielynn.blogspot.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2006 Report Share Posted May 13, 2006 My thoughts and prayer are with you and Cedie today! Hugs, Crystal and Eva > > Cedie is having the open lung biopsy today. Please pray for her, her > surgeons, nurses, and family. I'll update you as soon as I can. > > Thanks > > Mock - mom to Dylan and Cedie > www.cedielynn.blogspot.com > Quote Link to comment Share on other sites More sharing options...
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