Guest guest Posted March 28, 2006 Report Posted March 28, 2006 Congratulations! How exciting and so fun to hear the happiness in your voice! Have you really been in the hospital the whole nine months? Yikes! Max was in for six and we thought that was long! What is the issue with her lungs? Was she preemie too or is it all CHARGE issues? Congrats again! Keep us posted! mockfamily814 wrote: We just found out that they are going to try Cedie on 24 hr CPAP!!! We are so excited! She has done 14 hr trials since last Thursday and handled them well with good blood gases. So today they decided they would let her stay on CPAP unless she starts working too hard (breathing too fast). I really feel like she can do it this time. She is going to prove her Pulmonologist wrong! We are still draggig our heels on the whole lung and muscle biopsies issue. The attending told us that if we could get her off the vent and just on CPAP or trach collar, then we would get to go home regardless of what the Pulmonolgist said. After 9 long months, we just might be able to get her out of their and back to her home where she can really soar!!! Please pray with us that she does well and never has to return to being vent dependent! These first 24 hrs are going to be so nerve racking for all of us! Will update you tomorrow :-) Mock - mom to Dylan (5 yrs) and Cedie Lynn (9 mths old) 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
Guest guest Posted March 28, 2006 Report Posted March 28, 2006 Congratulations! How exciting and so fun to hear the happiness in your voice! Have you really been in the hospital the whole nine months? Yikes! Max was in for six and we thought that was long! What is the issue with her lungs? Was she preemie too or is it all CHARGE issues? Congrats again! Keep us posted! mockfamily814 wrote: We just found out that they are going to try Cedie on 24 hr CPAP!!! We are so excited! She has done 14 hr trials since last Thursday and handled them well with good blood gases. So today they decided they would let her stay on CPAP unless she starts working too hard (breathing too fast). I really feel like she can do it this time. She is going to prove her Pulmonologist wrong! We are still draggig our heels on the whole lung and muscle biopsies issue. The attending told us that if we could get her off the vent and just on CPAP or trach collar, then we would get to go home regardless of what the Pulmonolgist said. After 9 long months, we just might be able to get her out of their and back to her home where she can really soar!!! Please pray with us that she does well and never has to return to being vent dependent! These first 24 hrs are going to be so nerve racking for all of us! Will update you tomorrow :-) Mock - mom to Dylan (5 yrs) and Cedie Lynn (9 mths old) 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
Guest guest Posted March 28, 2006 Report Posted March 28, 2006 Congratulations! How exciting and so fun to hear the happiness in your voice! Have you really been in the hospital the whole nine months? Yikes! Max was in for six and we thought that was long! What is the issue with her lungs? Was she preemie too or is it all CHARGE issues? Congrats again! Keep us posted! mockfamily814 wrote: We just found out that they are going to try Cedie on 24 hr CPAP!!! We are so excited! She has done 14 hr trials since last Thursday and handled them well with good blood gases. So today they decided they would let her stay on CPAP unless she starts working too hard (breathing too fast). I really feel like she can do it this time. She is going to prove her Pulmonologist wrong! We are still draggig our heels on the whole lung and muscle biopsies issue. The attending told us that if we could get her off the vent and just on CPAP or trach collar, then we would get to go home regardless of what the Pulmonolgist said. After 9 long months, we just might be able to get her out of their and back to her home where she can really soar!!! Please pray with us that she does well and never has to return to being vent dependent! These first 24 hrs are going to be so nerve racking for all of us! Will update you tomorrow :-) Mock - mom to Dylan (5 yrs) and Cedie Lynn (9 mths old) 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
Guest guest Posted March 28, 2006 Report Posted March 28, 2006 - Prayers coming your way for Cedie to be successful on CPAP and go home soon! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote
Guest guest Posted March 28, 2006 Report Posted March 28, 2006 Actually, yes, she has been in the hospital for 9+ months, with the exception of 6 days. She went home at 2 1/2 months old but 6 days later she stopped breathing and went into cardiac arrest at home and so we had to take her back to the hospital. That is when they decided she needed a trach. We were suppose to get the trach and go home. She got the trach on 9/2/06 and has been vent dependent since. She was born 6 wks early and was only 4.3 lbs. We could not go home with a vent until she reached 6 kg. She actually reached that back in January but they still wouldn't let her go b/c they have been unable to figure out why she needs the vent. She has some heart defcts but cardiology says its not enough to make her vent dep. The pulmonologist says she may have a small degree of BPD but again, not enough to make her vent dep. She has coanal stinosis and paralysed vocal cords but the trach should make up for those problems. Any how, it has been a nightmare. I was starting to think she was just going to spend her whole infanthood at the hospital! Mock - mom to Dylan (5 yrs) and Cedie Lynn (9 mths old) > We just found out that they are going to try Cedie on 24 hr CPAP!!! > We are so excited! She has done 14 hr trials since last Thursday and > handled them well with good blood gases. So today they decided they > would let her stay on CPAP unless she starts working too hard > (breathing too fast). I really feel like she can do it this time. > She is going to prove her Pulmonologist wrong! > > We are still draggig our heels on the whole lung and muscle biopsies > issue. The attending told us that if we could get her off the vent > and just on CPAP or trach collar, then we would get to go home > regardless of what the Pulmonolgist said. After 9 long months, we > just might be able to get her out of their and back to her home > where she can really soar!!! > > Please pray with us that she does well and never has to return to > being vent dependent! These first 24 hrs are going to be so nerve > racking for all of us! > > Will update you tomorrow :-) > > Mock - mom to Dylan (5 yrs) and Cedie Lynn (9 mths old) > > > > > > > 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
Guest guest Posted March 28, 2006 Report Posted March 28, 2006 Thank you so much Mock - mom to Dylan (5 yrs) and Cedie Lynn (9 mths old) > > - > Prayers coming your way for Cedie to be successful on CPAP and go home soon! > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > Quote
Guest guest Posted March 28, 2006 Report Posted March 28, 2006 Thank you so much Mock - mom to Dylan (5 yrs) and Cedie Lynn (9 mths old) > > - > Prayers coming your way for Cedie to be successful on CPAP and go home soon! > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > Quote
Guest guest Posted March 29, 2006 Report Posted March 29, 2006 Congrats and hugs to you all. I will say a prayer that she will be home soon!! Hugs, Crystal and Eva (11 month chargeR) > > We just found out that they are going to try Cedie on 24 hr CPAP!!! > We are so excited! She has done 14 hr trials since last Thursday and > handled them well with good blood gases. So today they decided they > would let her stay on CPAP unless she starts working too hard > (breathing too fast). I really feel like she can do it this time. > She is going to prove her Pulmonologist wrong! > > We are still draggig our heels on the whole lung and muscle biopsies > issue. The attending told us that if we could get her off the vent > and just on CPAP or trach collar, then we would get to go home > regardless of what the Pulmonolgist said. After 9 long months, we > just might be able to get her out of their and back to her home > where she can really soar!!! > > Please pray with us that she does well and never has to return to > being vent dependent! These first 24 hrs are going to be so nerve > racking for all of us! > > Will update you tomorrow :-) > > Mock - mom to Dylan (5 yrs) and Cedie Lynn (9 mths old) > Quote
Guest guest Posted March 29, 2006 Report Posted March 29, 2006 Congrats and hugs to you all. I will say a prayer that she will be home soon!! Hugs, Crystal and Eva (11 month chargeR) > > We just found out that they are going to try Cedie on 24 hr CPAP!!! > We are so excited! She has done 14 hr trials since last Thursday and > handled them well with good blood gases. So today they decided they > would let her stay on CPAP unless she starts working too hard > (breathing too fast). I really feel like she can do it this time. > She is going to prove her Pulmonologist wrong! > > We are still draggig our heels on the whole lung and muscle biopsies > issue. The attending told us that if we could get her off the vent > and just on CPAP or trach collar, then we would get to go home > regardless of what the Pulmonolgist said. After 9 long months, we > just might be able to get her out of their and back to her home > where she can really soar!!! > > Please pray with us that she does well and never has to return to > being vent dependent! These first 24 hrs are going to be so nerve > racking for all of us! > > Will update you tomorrow :-) > > Mock - mom to Dylan (5 yrs) and Cedie Lynn (9 mths old) > Quote
Guest guest Posted March 29, 2006 Report Posted March 29, 2006 wonder if there arepeople who acutaly spend their hole life in hosp i know someone whose been in five years and ther e4was someone in kids who was in ten glad she is going on to cpap i have been on it and may need it again find otu next wed > > Congrats and hugs to you all. I will say a prayer that she will be > home soon!! > > Hugs, > Crystal and Eva (11 month chargeR) > > > > > > We just found out that they are going to try Cedie on 24 hr > CPAP!!! > > We are so excited! She has done 14 hr trials since last Thursday > and > > handled them well with good blood gases. So today they decided > they > > would let her stay on CPAP unless she starts working too hard > > (breathing too fast). I really feel like she can do it this time. > > She is going to prove her Pulmonologist wrong! > > > > We are still draggig our heels on the whole lung and muscle > biopsies > > issue. The attending told us that if we could get her off the vent > > and just on CPAP or trach collar, then we would get to go home > > regardless of what the Pulmonolgist said. After 9 long months, we > > just might be able to get her out of their and back to her home > > where she can really soar!!! > > > > Please pray with us that she does well and never has to return to > > being vent dependent! These first 24 hrs are going to be so nerve > > racking for all of us! > > > > Will update you tomorrow :-) > > > > Mock - mom to Dylan (5 yrs) and Cedie Lynn (9 mths old) > > > > > > > > > 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
Guest guest Posted March 29, 2006 Report Posted March 29, 2006 wonder if there arepeople who acutaly spend their hole life in hosp i know someone whose been in five years and ther e4was someone in kids who was in ten glad she is going on to cpap i have been on it and may need it again find otu next wed > > Congrats and hugs to you all. I will say a prayer that she will be > home soon!! > > Hugs, > Crystal and Eva (11 month chargeR) > > > > > > We just found out that they are going to try Cedie on 24 hr > CPAP!!! > > We are so excited! She has done 14 hr trials since last Thursday > and > > handled them well with good blood gases. So today they decided > they > > would let her stay on CPAP unless she starts working too hard > > (breathing too fast). I really feel like she can do it this time. > > She is going to prove her Pulmonologist wrong! > > > > We are still draggig our heels on the whole lung and muscle > biopsies > > issue. The attending told us that if we could get her off the vent > > and just on CPAP or trach collar, then we would get to go home > > regardless of what the Pulmonolgist said. After 9 long months, we > > just might be able to get her out of their and back to her home > > where she can really soar!!! > > > > Please pray with us that she does well and never has to return to > > being vent dependent! These first 24 hrs are going to be so nerve > > racking for all of us! > > > > Will update you tomorrow :-) > > > > Mock - mom to Dylan (5 yrs) and Cedie Lynn (9 mths old) > > > > > > > > > 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
Guest guest Posted March 29, 2006 Report Posted March 29, 2006 Ellen, I know one of the charge kids was in hospital till he was adopted at 6. I dont think him or his mom are on the list any more though. I cant remember his name either. There were from the Pennsilvania state if I remember correctly. Chantelle Quote
Guest guest Posted April 3, 2006 Report Posted April 3, 2006 Please know I'll keep her in my prayers. Let us know how it goes. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote
Guest guest Posted April 3, 2006 Report Posted April 3, 2006 Please know I'll keep her in my prayers. Let us know how it goes. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote
Guest guest Posted April 3, 2006 Report Posted April 3, 2006 Please know I'll keep her in my prayers. Let us know how it goes. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote
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