Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 pls update on that surgery i dont think ive heard of that other one eather or if i have well usualy chargers would usualy have tef fistula and soemthing not all at once sorry if that doesnt make sence but i have no heart probs jsut soem veinal access probs but i do no a bit form here lol > > I wanted to give an update on . > > He is still in the ICU where he has been since after Thanksgiving. As > you know he had the open heart surgery in October to correct the > Tetralogy of Fallot. Last Thursday he had another heart surgery > (catherization) to close the other holes in the heart that were still > causing problems. (Initially they had thought that these would close > on their own with time, and the surgeon thought it would be to risky > to go into that part on the heart surgically.)The catherization > (closed)procedure required FDA approval as it is still very new in > the US. They were successful in closing the holes. They had hoped > that would fix his heart problems ( & breathing problems) but he did > not rally, and could not be taken off the ventilator. Today they took > him back to the cath lab, and did another angiogram, and have found > that he has another heart defect with the pulmonary artery!, and he > needs to go in for another open heart surgery tomorrow. The > cardiologist said his defect is very rare, and was not seen before in > this combination of defects, but it needs to be fixed if he is to > survive infancy. > > is now 6 1/2 months and he has been fighting for his life almost > the entire time. It has been very difficult to see him intubated and > struggling to breathe, but he is such a fighter, and I have been > lucky to have seen him in the brief times when he has been off tubes > and sedation long enough to smile and be a cute little baby. We hope > this surgery finally fixes his heart and he can leave the hospital > soon. I am sure he will have other issues to deal with in the future, > but all we can do is take one day at a time. Tomorrow will be another > big day in his life. > > I know your thoughts and prayers are with . > > Liz > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 hugs to u all > > pls update on that surgery i dont think ive heard of that other one eather > or if i have well usualy chargers would usualy have tef fistula and > soemthing not all at once sorry if that doesnt make sence but i have no > heart probs jsut soem veinal access probs but i do no a bit form here lol > > > > > > I wanted to give an update on . > > > > He is still in the ICU where he has been since after Thanksgiving. As > > you know he had the open heart surgery in October to correct the > > Tetralogy of Fallot. Last Thursday he had another heart surgery > > (catherization) to close the other holes in the heart that were still > > causing problems. (Initially they had thought that these would close > > on their own with time, and the surgeon thought it would be to risky > > to go into that part on the heart surgically.)The catherization > > (closed)procedure required FDA approval as it is still very new in > > the US. They were successful in closing the holes. They had hoped > > that would fix his heart problems ( & breathing problems) but he did > > not rally, and could not be taken off the ventilator. Today they took > > him back to the cath lab, and did another angiogram, and have found > > that he has another heart defect with the pulmonary artery!, and he > > needs to go in for another open heart surgery tomorrow. The > > cardiologist said his defect is very rare, and was not seen before in > > this combination of defects, but it needs to be fixed if he is to > > survive infancy. > > > > is now 6 1/2 months and he has been fighting for his life almost > > the entire time. It has been very difficult to see him intubated and > > struggling to breathe, but he is such a fighter, and I have been > > lucky to have seen him in the brief times when he has been off tubes > > and sedation long enough to smile and be a cute little baby. We hope > > this surgery finally fixes his heart and he can leave the hospital > > soon. I am sure he will have other issues to deal with in the future, > > but all we can do is take one day at a time. Tomorrow will be another > > big day in his life. > > > > I know your thoughts and prayers are with . > > > > Liz > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 Liz, How difficult to be in the hospital that long and on the vent for so long. You all must be so weary. Wishing you all so much strength. Please keep us posted when you can. I know it isn't easy when you're living in the hospital 'dimension'. Hugs, (Kennedy's Mom) > > I wanted to give an update on . > > He is still in the ICU where he has been since after Thanksgiving. As > you know he had the open heart surgery in October to correct the > Tetralogy of Fallot. Last Thursday he had another heart surgery > (catherization) to close the other holes in the heart that were still > causing problems. (Initially they had thought that these would close > on their own with time, and the surgeon thought it would be to risky > to go into that part on the heart surgically.)The catherization > (closed)procedure required FDA approval as it is still very new in > the US. They were successful in closing the holes. They had hoped > that would fix his heart problems ( & breathing problems) but he did > not rally, and could not be taken off the ventilator. Today they took > him back to the cath lab, and did another angiogram, and have found > that he has another heart defect with the pulmonary artery!, and he > needs to go in for another open heart surgery tomorrow. The > cardiologist said his defect is very rare, and was not seen before in > this combination of defects, but it needs to be fixed if he is to > survive infancy. > > is now 6 1/2 months and he has been fighting for his life almost > the entire time. It has been very difficult to see him intubated and > struggling to breathe, but he is such a fighter, and I have been > lucky to have seen him in the brief times when he has been off tubes > and sedation long enough to smile and be a cute little baby. We hope > this surgery finally fixes his heart and he can leave the hospital > soon. I am sure he will have other issues to deal with in the future, > but all we can do is take one day at a time. Tomorrow will be another > big day in his life. > > I know your thoughts and prayers are with . > > Liz > > > > > -- " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 liz, i will pray for your family. he sounds like a tough little guy. god be with your family. stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 They truly are, Liz. With all good thoughts. pam > > > > > I wanted to give an update on . > > He is still in the ICU where he has been since after Thanksgiving. As > you know he had the open heart surgery in October to correct the > Tetralogy of Fallot. Last Thursday he had another heart surgery > (catherization) to close the other holes in the heart that were still > causing problems. (Initially they had thought that these would close > on their own with time, and the surgeon thought it would be to risky > to go into that part on the heart surgically.)The catherization > (closed)procedure required FDA approval as it is still very new in > the US. They were successful in closing the holes. They had hoped > that would fix his heart problems ( & breathing problems) but he did > not rally, and could not be taken off the ventilator. Today they took > him back to the cath lab, and did another angiogram, and have found > that he has another heart defect with the pulmonary artery!, and he > needs to go in for another open heart surgery tomorrow. The > cardiologist said his defect is very rare, and was not seen before in > this combination of defects, but it needs to be fixed if he is to > survive infancy. > > is now 6 1/2 months and he has been fighting for his life almost > the entire time. It has been very difficult to see him intubated and > struggling to breathe, but he is such a fighter, and I have been > lucky to have seen him in the brief times when he has been off tubes > and sedation long enough to smile and be a cute little baby. We hope > this surgery finally fixes his heart and he can leave the hospital > soon. I am sure he will have other issues to deal with in the future, > but all we can do is take one day at a time. Tomorrow will be another > big day in his life. > > I know your thoughts and prayers are with . > > Liz > > > > > -- Pamela J. , M.A., CAGS Licensed Educational Psychologist Deafblind Program Perkins School for the Blind 175 N. Beacon St. Watertown, MA 02472 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 Liz- I know these are incredibly tough times. has had such a very difficult start. I hope this is the final heart surgery and that he gets home soon. Once you get all the medical stuff under control, things will get better. I remember in the beginning feeling that Aubrie was just a bundle of medical problems - instead of a bundle of joy. I didn't have time or energy to find the baby in her cuz her medical care took all of our attention. But eventually, the baby emerged and the medical problems subsided. It's taking longer for , but it will happen. Hang in there. Prayers to you all. Michele W Aubrie's mom 9 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 Liz, He sounds like he is a huge fighter, nevertheless he will be in my thoughts and prayers all day and night into tomorrow. Hugs, Crystal mom to (11), (3), and Eva (21 month old CHARGEr) wife to Dan in Illinois > > I wanted to give an update on . > > He is still in the ICU where he has been since after Thanksgiving. As > you know he had the open heart surgery in October to correct the > Tetralogy of Fallot. Last Thursday he had another heart surgery > (catherization) to close the other holes in the heart that were still > causing problems. (Initially they had thought that these would close > on their own with time, and the surgeon thought it would be to risky > to go into that part on the heart surgically.)The catherization > (closed)procedure required FDA approval as it is still very new in > the US. They were successful in closing the holes. They had hoped > that would fix his heart problems ( & breathing problems) but he did > not rally, and could not be taken off the ventilator. Today they took > him back to the cath lab, and did another angiogram, and have found > that he has another heart defect with the pulmonary artery!, and he > needs to go in for another open heart surgery tomorrow. The > cardiologist said his defect is very rare, and was not seen before in > this combination of defects, but it needs to be fixed if he is to > survive infancy. > > is now 6 1/2 months and he has been fighting for his life almost > the entire time. It has been very difficult to see him intubated and > struggling to breathe, but he is such a fighter, and I have been > lucky to have seen him in the brief times when he has been off tubes > and sedation long enough to smile and be a cute little baby. We hope > this surgery finally fixes his heart and he can leave the hospital > soon. I am sure he will have other issues to deal with in the future, > but all we can do is take one day at a time. Tomorrow will be another > big day in his life. > > I know your thoughts and prayers are with . > > Liz > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 Liz, Little has been through so much! I'll be thinking about him and praying that his heart surgery goes well. Hopefully, this will be the one that turns things around for him and allows him to come home for good. Hugs, , mom to (5) http://kauffmanlak.blogspot.com/ --------------------------------- Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Yahoo! Travel to find your fit. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 My heart (and prayers) are with you and . My daughter, , had her Tetraology of Fallot and Pulmonary Atresia repair when she was 15 months old. We pray that will bounce back soon! Lori Myers Spouse - Trent, Children - (9), (6, CHARGE Syndrome, Congenital Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of 12/22/04!, and Emma (4). Dallas, Texas in Oregon I wanted to give an update on . He is still in the ICU where he has been since after Thanksgiving. As you know he had the open heart surgery in October to correct the Tetralogy of Fallot. Last Thursday he had another heart surgery (catherization) to close the other holes in the heart that were still causing problems. (Initially they had thought that these would close on their own with time, and the surgeon thought it would be to risky to go into that part on the heart surgically.)The catherization (closed)procedure required FDA approval as it is still very new in the US. They were successful in closing the holes. They had hoped that would fix his heart problems ( & breathing problems) but he did not rally, and could not be taken off the ventilator. Today they took him back to the cath lab, and did another angiogram, and have found that he has another heart defect with the pulmonary artery!, and he needs to go in for another open heart surgery tomorrow. The cardiologist said his defect is very rare, and was not seen before in this combination of defects, but it needs to be fixed if he is to survive infancy. is now 6 1/2 months and he has been fighting for his life almost the entire time. It has been very difficult to see him intubated and struggling to breathe, but he is such a fighter, and I have been lucky to have seen him in the brief times when he has been off tubes and sedation long enough to smile and be a cute little baby. We hope this surgery finally fixes his heart and he can leave the hospital soon. I am sure he will have other issues to deal with in the future, but all we can do is take one day at a time. Tomorrow will be another big day in his life. I know your thoughts and prayers are with . Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 Liz, We will most definitely be praying for . I am so sorry he's having such a rough road. My son is 5 mos and also has Tet of Fallot(BT shunt 4 days old, final repair yet to come). I can totally empathize with the whole " we've never seen this before " thing. My oldest CHARGEr (10 yrs) has had and will have many other open heart surgeries from a simple VSD/ASD that should have been fixed w/ one surgery. Whenever they tell me risks of something and they say " very rarely " I can 't help but worry about that...a LOT. We will be thinking of as he hasthis next surgery. We will pray this is the answer to him getting on the road to geting home. Please, as Ellensaid, keep us updated. We're all here for you! Corrie Young mom to Peyton 10 CHARGE,Cy 7, 4 and Tate 5 mos. CHARGE > > Liz- > > I know these are incredibly tough times. has had such a very > difficult > start. I hope this is the final heart surgery and that he gets home soon. > Once you get all the medical stuff under control, things will get better. > I > remember in the beginning feeling that Aubrie was just a bundle of medical > problems - instead of a bundle of joy. I didn't have time or energy to > find > the baby in her cuz her medical care took all of our attention. But > eventually, the baby emerged and the medical problems subsided. It's > taking > longer for , but it will happen. Hang in there. Prayers to you all. > > Michele W > Aubrie's mom 9 yrs > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2007 Report Share Posted January 26, 2007 Thanks for the update, Liz. I've been thinking about and wondering how he is coming along. He remains in our prayers. ina, mom to Luca (3.5) & Vinny (1.5 w/ cHARgE) --- liz_dolz wrote: > I wanted to give an update on . > > He is still in the ICU where he has been since after > Thanksgiving. As > you know he had the open heart surgery in October to > correct the > Tetralogy of Fallot. Last Thursday he had another > heart surgery > (catherization) to close the other holes in the > heart that were still > causing problems. (Initially they had thought that > these would close > on their own with time, and the surgeon thought it > would be to risky > to go into that part on the heart surgically.)The > catherization > (closed)procedure required FDA approval as it is > still very new in > the US. They were successful in closing the holes. > They had hoped > that would fix his heart problems ( & breathing > problems) but he did > not rally, and could not be taken off the > ventilator. Today they took > him back to the cath lab, and did another angiogram, > and have found > that he has another heart defect with the pulmonary > artery!, and he > needs to go in for another open heart surgery > tomorrow. The > cardiologist said his defect is very rare, and was > not seen before in > this combination of defects, but it needs to be > fixed if he is to > survive infancy. > > is now 6 1/2 months and he has been fighting > for his life almost > the entire time. It has been very difficult to see > him intubated and > struggling to breathe, but he is such a fighter, and > I have been > lucky to have seen him in the brief times when he > has been off tubes > and sedation long enough to smile and be a cute > little baby. We hope > this surgery finally fixes his heart and he can > leave the hospital > soon. I am sure he will have other issues to deal > with in the future, > but all we can do is take one day at a time. > Tomorrow will be another > big day in his life. > > I know your thoughts and prayers are with . > > Liz > > > > > ________________________________________________________________________________\ ____ Don't pick lemons. See all the new 2007 cars at Yahoo! Autos. http://autos.yahoo.com/new_cars.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2007 Report Share Posted January 26, 2007 > > I wanted to give an update on . > > He is still in the ICU where he has been since after Thanksgiving. As > you know he had the open heart surgery in October to correct the > Tetralogy of Fallot. Last Thursday he had another heart surgery > (catherization) to close the other holes in the heart that were still > causing problems. (Initially they had thought that these would close > on their own with time, and the surgeon thought it would be to risky > to go into that part on the heart surgically.)The catherization > (closed)procedure required FDA approval as it is still very new in > the US. They were successful in closing the holes. They had hoped > that would fix his heart problems ( & breathing problems) but he did > not rally, and could not be taken off the ventilator. Today they took > him back to the cath lab, and did another angiogram, and have found > that he has another heart defect with the pulmonary artery!, and he > needs to go in for another open heart surgery tomorrow. The > cardiologist said his defect is very rare, and was not seen before in > this combination of defects, but it needs to be fixed if he is to > survive infancy. > > is now 6 1/2 months and he has been fighting for his life almost > the entire time. It has been very difficult to see him intubated and > struggling to breathe, but he is such a fighter, and I have been > lucky to have seen him in the brief times when he has been off tubes > and sedation long enough to smile and be a cute little baby. We hope > this surgery finally fixes his heart and he can leave the hospital > soon. I am sure he will have other issues to deal with in the future, > but all we can do is take one day at a time. Tomorrow will be another > big day in his life. > > I know your thoughts and prayers are with . > > Liz > Dear Liz, I am so sorry to hear about s long tough struggle,but he certainly sounds like a fighter, as these CHARGE kids tend to be..My families thoughts and prayers are with you and your family..God Bless... Platania (mom to 6 yr. old CHARGER) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2007 Report Share Posted April 12, 2007 wow liz im thinking of forwarding this to cedies mum coz i think its similar to wat she had and she died in the end hugs to you all > > I have not posted anything about in a long time. His condition > changes so often and he is IN and OUT of the hospital so much, It is > hard to keep up with updates. After his 3 heart surgeries, and the > Nissen for reflux we thought he was out of the woods, but then he > started having seizures, and several episodes of life threatening > blue spells, he has coded and been brought back. Last night while in > the hospital his heart stopped. They managed to start it again, and > he is at Doernbecker. He is now 9 months old, and he has spent most > of his life in and out of the hospital. The longest time at home was > one month, after he first came home from NICU. Every other time he > comes home from the hospital he ends up going back within a few days, > usually due to respiratory distress or blue spells, and now with the > seizures. > Leon and Racheal, have ended up losing their business and are > claiming bankrupcy. with the incredible emotional stress since > was born, they continue to have a positive attitude and continue to > grow in their +personal lives, becoming stronger. And as for > me,'s grandma, I cry alot and pray for my family to be able to > survive this tragedy. > > I wold like to ask if anyone here have children who have survived a > cardiac arrest? has there been brain injury? Anyone with pacemakers? > seizures that started around 6 months which have been very difficult > to control? And to be honest with you, I think these super > specialists really are confused and really dont know what is going on > with . > Wishing you All the very best for your families,even though I have > not posted for some time, I do read as much as possible about you all. > > Liz > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2007 Report Share Posted April 12, 2007 Dear Liz, Words can't begin to address what you all have been and are going through. I hold and the family in prayer. in Ma. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2007 Report Share Posted April 12, 2007 My thoughts and prayers are with you all!! Hugs, Crystal mom to (11), (4), and Eva (2 year old CHARGEr) wife to Dan in Illinois > > I have not posted anything about in a long time. His condition > changes so often and he is IN and OUT of the hospital so much, It is > hard to keep up with updates. After his 3 heart surgeries, and the > Nissen for reflux we thought he was out of the woods, but then he > started having seizures, and several episodes of life threatening > blue spells, he has coded and been brought back. Last night while in > the hospital his heart stopped. They managed to start it again, and > he is at Doernbecker. He is now 9 months old, and he has spent most > of his life in and out of the hospital. The longest time at home was > one month, after he first came home from NICU. Every other time he > comes home from the hospital he ends up going back within a few days, > usually due to respiratory distress or blue spells, and now with the > seizures. > Leon and Racheal, have ended up losing their business and are > claiming bankrupcy. with the incredible emotional stress since > was born, they continue to have a positive attitude and continue to > grow in their +personal lives, becoming stronger. And as for > me,'s grandma, I cry alot and pray for my family to be able to > survive this tragedy. > > I wold like to ask if anyone here have children who have survived a > cardiac arrest? has there been brain injury? Anyone with pacemakers? > seizures that started around 6 months which have been very difficult > to control? And to be honest with you, I think these super > specialists really are confused and really dont know what is going on > with . > Wishing you All the very best for your families,even though I have > not posted for some time, I do read as much as possible about you all. > > Liz > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2007 Report Share Posted April 12, 2007 Dear Liz, I am so sorry to hear of the continued difficulties that experiences. His parents are doing a good job in holding on to their strength and in supporting their children. Your support and prayer is invaluable. In answer to your question, we don't have experience with seizures, but we do have experiences with heart stoppages. Kendra experienced at least one major and possibly three times when her heart stopped. One time was for at least 7 minutes. I do not believe her difficulties in language learning are directly related to those situations. There is at least one child on the list with a pacemaker and possibly two children. Because we have many connections in Oregon, I'd be glad to talk with you about doctors that helped us. Kendra's cardiologist in Seattle is a saint. :-) I send love and strenth and prayer your way and to and his family. in Oregon I have not posted anything about in a long time. His condition changes so often and he is IN and OUT of the hospital so much, It is hard to keep up with updates. After his 3 heart surgeries, and the Nissen for reflux we thought he was out of the woods, but then he started having seizures, and several episodes of life threatening blue spells, he has coded and been brought back. Last night while in the hospital his heart stopped. They managed to start it again, and he is at Doernbecker. He is now 9 months old, and he has spent most of his life in and out of the hospital. The longest time at home was one month, after he first came home from NICU. Every other time he comes home from the hospital he ends up going back within a few days, usually due to respiratory distress or blue spells, and now with the seizures. Leon and Racheal, have ended up losing their business and are claiming bankrupcy. with the incredible emotional stress since was born, they continue to have a positive attitude and continue to grow in their +personal lives, becoming stronger. And as for me,'s grandma, I cry alot and pray for my family to be able to survive this tragedy. I wold like to ask if anyone here have children who have survived a cardiac arrest? has there been brain injury? Anyone with pacemakers? seizures that started around 6 months which have been very difficult to control? And to be honest with you, I think these super specialists really are confused and really dont know what is going on with . Wishing you All the very best for your families,even though I have not posted for some time, I do read as much as possible about you all. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2007 Report Share Posted April 12, 2007 Liz, My heart goes out to you and 's mom and dad. It must be very hard for them to live between Portland and southern Oregon. My son does not have as many serious issues as does, so I can't say I know exactly how they are feeling. I do know what it's like to be scared for the future because of finances though, and I know what it's like to wonder if your child has brain damage or congnitive impairment and be told all you can really do is wait and see. Evan coded one time while he was in the hospital (the day he was transferred from the NICU of one hospital to the general medical floor of another one--go figure). I was not there and I don't know exactly how long he was not breathing for, but it was long enough that they checked his blood for evidence of cell damage/death that could indicate brain damage--the tests were negative and he is OK in that regard today. Evan also desatted so many times so low in the hospital and I asked the Drs if hypoxia (lack of oxygen) was a cumulative effect--meaning if it repeatedly happens does it cause damage. They said no, because the tissues are recovering between episodes. (mom to Evan, 20 months) liz_dolz wrote: I have not posted anything about in a long time. His condition changes so often and he is IN and OUT of the hospital so much, It is hard to keep up with updates. After his 3 heart surgeries, and the Nissen for reflux we thought he was out of the woods, but then he started having seizures, and several episodes of life threatening blue spells, he has coded and been brought back. Last night while in the hospital his heart stopped. They managed to start it again, and he is at Doernbecker. He is now 9 months old, and he has spent most of his life in and out of the hospital. The longest time at home was one month, after he first came home from NICU. Every other time he comes home from the hospital he ends up going back within a few days, usually due to respiratory distress or blue spells, and now with the seizures. Leon and Racheal, have ended up losing their business and are claiming bankrupcy. with the incredible emotional stress since was born, they continue to have a positive attitude and continue to grow in their +personal lives, becoming stronger. And as for me,'s grandma, I cry alot and pray for my family to be able to survive this tragedy. I wold like to ask if anyone here have children who have survived a cardiac arrest? has there been brain injury? Anyone with pacemakers? seizures that started around 6 months which have been very difficult to control? And to be honest with you, I think these super specialists really are confused and really dont know what is going on with . Wishing you All the very best for your families,even though I have not posted for some time, I do read as much as possible about you all. Liz --------------------------------- Get your own web address. Have a HUGE year through Yahoo! Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2007 Report Share Posted April 12, 2007 Hi Liz, I am sorry I don't have any experience with the heart or seizure problems you are seeking information on. I just wanted to say all our thoughts are with you and and his parents. is (Mum to , UK. 3.5 yrs) > > I have not posted anything about in a long time. His condition > changes so often and he is IN and OUT of the hospital so much, It is > hard to keep up with updates. After his 3 heart surgeries, and the > Nissen for reflux we thought he was out of the woods, but then he > started having seizures, and several episodes of life threatening > blue spells, he has coded and been brought back. Last night while in > the hospital his heart stopped. They managed to start it again, and > he is at Doernbecker. He is now 9 months old, and he has spent most > of his life in and out of the hospital. The longest time at home was > one month, after he first came home from NICU. Every other time he > comes home from the hospital he ends up going back within a few days, > usually due to respiratory distress or blue spells, and now with the > seizures. > Leon and Racheal, have ended up losing their business and are > claiming bankrupcy. with the incredible emotional stress since > was born, they continue to have a positive attitude and continue to > grow in their +personal lives, becoming stronger. And as for > me,'s grandma, I cry alot and pray for my family to be able to > survive this tragedy. > > I wold like to ask if anyone here have children who have survived a > cardiac arrest? has there been brain injury? Anyone with pacemakers? > seizures that started around 6 months which have been very difficult > to control? And to be honest with you, I think these super > specialists really are confused and really dont know what is going on > with . > Wishing you All the very best for your families,even though I have > not posted for some time, I do read as much as possible about you all. > > Liz > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2007 Report Share Posted April 12, 2007 Liz, I think of you and and the rest of 's family quite often. I am so sorry to hear things are not so good right now. I have no insights to offer. Vinny's doctors spoke of inserting a pacemaker but we never ended up needing it. Our family will pray for you. God Bless you all, especially . With love, ina, , Luca (3.5), & Vinny (1.5 w/ cHARgE) --- liz_dolz wrote: > I have not posted anything about in a long > time. His condition > changes so often and he is IN and OUT of the > hospital so much, It is > hard to keep up with updates. After his 3 heart > surgeries, and the > Nissen for reflux we thought he was out of the > woods, but then he > started having seizures, and several episodes of > life threatening > blue spells, he has coded and been brought back. > Last night while in > the hospital his heart stopped. They managed to > start it again, and > he is at Doernbecker. He is now 9 months old, and he > has spent most > of his life in and out of the hospital. The longest > time at home was > one month, after he first came home from NICU. Every > other time he > comes home from the hospital he ends up going back > within a few days, > usually due to respiratory distress or blue spells, > and now with the > seizures. > Leon and Racheal, have ended up losing their > business and are > claiming bankrupcy. with the incredible emotional > stress since > was born, they continue to have a positive attitude > and continue to > grow in their +personal lives, becoming stronger. > And as for > me,'s grandma, I cry alot and pray for my family > to be able to > survive this tragedy. > > I wold like to ask if anyone here have children who > have survived a > cardiac arrest? has there been brain injury? Anyone > with pacemakers? > seizures that started around 6 months which have > been very difficult > to control? And to be honest with you, I think these > super > specialists really are confused and really dont know > what is going on > with . > Wishing you All the very best for your families,even > though I have > not posted for some time, I do read as much as > possible about you all. > > Liz > > ________________________________________________________________________________\ ____ Finding fabulous fares is fun. Let Yahoo! FareChase search your favorite travel sites to find flight and hotel bargains. http://farechase.yahoo.com/promo-generic-14795097 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2007 Report Share Posted April 12, 2007 Liz, I wish I had some advice to offer on those conditions but we fortunately didn't have to deal with those types of situations. Please send our love to them and keep us posted as you can. www.chargesyndrome.info > > Hi Liz, > > I am sorry I don't have any experience with the heart or seizure problems > you are seeking information on. > I just wanted to say all our thoughts are with you and and his > parents. > > is (Mum to , UK. 3.5 yrs) > > On 4/12/07, liz_dolz <liz_dolz@... <liz_dolz%40yahoo.com>> wrote: > > > > I have not posted anything about in a long time. His condition > > changes so often and he is IN and OUT of the hospital so much, It is > > hard to keep up with updates. After his 3 heart surgeries, and the > > Nissen for reflux we thought he was out of the woods, but then he > > started having seizures, and several episodes of life threatening > > blue spells, he has coded and been brought back. Last night while in > > the hospital his heart stopped. They managed to start it again, and > > he is at Doernbecker. He is now 9 months old, and he has spent most > > of his life in and out of the hospital. The longest time at home was > > one month, after he first came home from NICU. Every other time he > > comes home from the hospital he ends up going back within a few days, > > usually due to respiratory distress or blue spells, and now with the > > seizures. > > Leon and Racheal, have ended up losing their business and are > > claiming bankrupcy. with the incredible emotional stress since > > was born, they continue to have a positive attitude and continue to > > grow in their +personal lives, becoming stronger. And as for > > me,'s grandma, I cry alot and pray for my family to be able to > > survive this tragedy. > > > > I wold like to ask if anyone here have children who have survived a > > cardiac arrest? has there been brain injury? Anyone with pacemakers? > > seizures that started around 6 months which have been very difficult > > to control? And to be honest with you, I think these super > > specialists really are confused and really dont know what is going on > > with . > > Wishing you All the very best for your families,even though I have > > not posted for some time, I do read as much as possible about you all. > > > > Liz > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2007 Report Share Posted April 12, 2007 Hi, Liz! My 13 year old daughter, , has complex heart disease and had a pacemaker placed in June 2003 to address bradycardia issues that developed slowly after her Fontan surgery in 1996. I would be happy to answer any questions you have or share any information we gathered on pacemakers. Sending good thoughts for and your family. W. mom to (22), Alyssa (17) and (13 CHaRgE) Woodbury, Minnesota > > I have not posted anything about in a long time. His condition > changes so often and he is IN and OUT of the hospital so much, It is > hard to keep up with updates. After his 3 heart surgeries, and the > Nissen for reflux we thought he was out of the woods, but then he > started having seizures, and several episodes of life threatening > blue spells, he has coded and been brought back. Last night while in > the hospital his heart stopped. They managed to start it again, and > he is at Doernbecker. He is now 9 months old, and he has spent most > of his life in and out of the hospital. The longest time at home was > one month, after he first came home from NICU. Every other time he > comes home from the hospital he ends up going back within a few days, > usually due to respiratory distress or blue spells, and now with the > seizures. > Leon and Racheal, have ended up losing their business and are > claiming bankrupcy. with the incredible emotional stress since > was born, they continue to have a positive attitude and continue to > grow in their +personal lives, becoming stronger. And as for > me,'s grandma, I cry alot and pray for my family to be able to > survive this tragedy. > > I wold like to ask if anyone here have children who have survived a > cardiac arrest? has there been brain injury? Anyone with pacemakers? > seizures that started around 6 months which have been very difficult > to control? And to be honest with you, I think these super > specialists really are confused and really dont know what is going on > with . > Wishing you All the very best for your families,even though I have > not posted for some time, I do read as much as possible about you all. > > Liz > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2007 Report Share Posted April 12, 2007 These are the times when I feel so helpless. All I have to give is my prayers for and family. Know that my heart is with you all. mom to (31) > > I have not posted anything about in a long time. His condition > changes so often and he is IN and OUT of the hospital so much, It is > hard to keep up with updates. After his 3 heart surgeries, and the > Nissen for reflux we thought he was out of the woods, but then he > started having seizures, and several episodes of life threatening > blue spells, he has coded and been brought back. Last night while in > the hospital his heart stopped. They managed to start it again, and > he is at Doernbecker. He is now 9 months old, and he has spent most > of his life in and out of the hospital. The longest time at home was > one month, after he first came home from NICU. Every other time he > comes home from the hospital he ends up going back within a few days, > usually due to respiratory distress or blue spells, and now with the > seizures. > Leon and Racheal, have ended up losing their business and are > claiming bankrupcy. with the incredible emotional stress since > was born, they continue to have a positive attitude and continue to > grow in their +personal lives, becoming stronger. And as for > me,'s grandma, I cry alot and pray for my family to be able to > survive this tragedy. > > I wold like to ask if anyone here have children who have survived a > cardiac arrest? has there been brain injury? Anyone with pacemakers? > seizures that started around 6 months which have been very difficult > to control? And to be honest with you, I think these super > specialists really are confused and really dont know what is going on > with . > Wishing you All the very best for your families,even though I have > not posted for some time, I do read as much as possible about you all. > > Liz > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2007 Report Share Posted April 12, 2007 We have been praying for every nite since we heard of his trouble a while back. I'm so glad you updated. My son(almost 8 months) has had many bad scared since he was born and we've spent lots of time in the PICU. That's why l stuck in my head to pray for. I do know that during one of our admissions, one of our roomates had just gotten a pacemaker. She had transplant several years ago when she was an infant(she's now 11). They acted like the pacemaker was not all that big of a deal(not to minimize what is going through). I just don't think there are tons of limitations with it or anything like that. Best of luck to you all and take care. We will continue to keep praying for you all, especially little sweet . Corrie Young mom to Peyton CHARGE 10, Cy 7, Catheriene 4 and Tate CHARGE 8mos. > > These are the times when I feel so helpless. All I have to give is my > prayers for and family. Know that my heart is with you all. > > mom to (31) > > > > > > I have not posted anything about in a long time. His condition > > changes so often and he is IN and OUT of the hospital so much, It > is > > hard to keep up with updates. After his 3 heart surgeries, and the > > Nissen for reflux we thought he was out of the woods, but then he > > started having seizures, and several episodes of life threatening > > blue spells, he has coded and been brought back. Last night while > in > > the hospital his heart stopped. They managed to start it again, and > > he is at Doernbecker. He is now 9 months old, and he has spent most > > of his life in and out of the hospital. The longest time at home > was > > one month, after he first came home from NICU. Every other time he > > comes home from the hospital he ends up going back within a few > days, > > usually due to respiratory distress or blue spells, and now with > the > > seizures. > > Leon and Racheal, have ended up losing their business and are > > claiming bankrupcy. with the incredible emotional stress since > > was born, they continue to have a positive attitude and continue to > > grow in their +personal lives, becoming stronger. And as for > > me,'s grandma, I cry alot and pray for my family to be able to > > survive this tragedy. > > > > I wold like to ask if anyone here have children who have survived > a > > cardiac arrest? has there been brain injury? Anyone with > pacemakers? > > seizures that started around 6 months which have been very > difficult > > to control? And to be honest with you, I think these super > > specialists really are confused and really dont know what is going > on > > with . > > Wishing you All the very best for your families,even though I have > > not posted for some time, I do read as much as possible about you > all. > > > > Liz > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2007 Report Share Posted April 13, 2007 Hi , Thanks for your mail. I would like to ask you the name and number of the doctor in Seattle. I know you gave it to me before, but I cant find it. I am going to Doernbecker tomorrow, and want to give Racheal the number. I am curious, how long ago did he treat Kendra? Do you have any other names of doctors in Portland? Thank you again! Liz -- Re: in Oregon Dear Liz, I am so sorry to hear of the continued difficulties that experiences. His parents are doing a good job in holding on to their strength and in supporting their children. Your support and prayer is invaluable. In answer to your question, we don't have experience with seizures, but we do have experiences with heart stoppages. Kendra experienced at least one major and possibly three times when her heart stopped. One time was for at least 7 minutes. I do not believe her difficulties in language learning are directly related to those situations. There is at least one child on the list with a pacemaker and possibly two children. Because we have many connections in Oregon, I'd be glad to talk with you about doctors that helped us. Kendra's cardiologist in Seattle is a saint. :-) I send love and strenth and prayer your way and to and his family. in Oregon I have not posted anything about in a long time. His condition changes so often and he is IN and OUT of the hospital so much, It is hard to keep up with updates. After his 3 heart surgeries, and the Nissen for reflux we thought he was out of the woods, but then he started having seizures, and several episodes of life threatening blue spells, he has coded and been brought back. Last night while in the hospital his heart stopped. They managed to start it again, and he is at Doernbecker. He is now 9 months old, and he has spent most of his life in and out of the hospital. The longest time at home was one month, after he first came home from NICU. Every other time he comes home from the hospital he ends up going back within a few days, usually due to respiratory distress or blue spells, and now with the seizures. Leon and Racheal, have ended up losing their business and are claiming bankrupcy. with the incredible emotional stress since was born, they continue to have a positive attitude and continue to grow in their +personal lives, becoming stronger. And as for me,'s grandma, I cry alot and pray for my family to be able to survive this tragedy. I wold like to ask if anyone here have children who have survived a cardiac arrest? has there been brain injury? Anyone with pacemakers? seizures that started around 6 months which have been very difficult to control? And to be honest with you, I think these super specialists really are confused and really dont know what is going on with . Wishing you All the very best for your families,even though I have not posted for some time, I do read as much as possible about you all. Liz Quote Link to comment Share on other sites More sharing options...
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