Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 Hi Pushpa, I'm so glad he's home! We are heading to Sick Kids tomorrow for an appointment so I wanted to see if Aman was in hospital or not for a visit but I'm glad he's NOT still in hospital. I wish you a safe journey and I'm glad we had the opportunity to meet you. Hope to hear from you again once settled in India. Hugs to Aman, Poonham and Amrit. Pat Pat, , (14), (11-CHARGE) Rittgasser Keswick, Ontario Canada Re: Update Thanks Pat for your concern, Aman came home on thursday 31st october after being more than a month in hospital, with the Bi-Pap at night and prongs in the day for oxygen he is comfortable. We are leaving this week for India, and should be back next year. Pushpa grandma to Aman 1 year old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 Kath, I am sorry to hear that you guys are " in the valley " right now. I was wondering if has tried glucosamine for his aching joints. I have heard many people sing its praises. I know it is important that it is the pure stuff, without the additives. I have seen big sections of it in the health food store. I don't know what cervical radiculopathy is but if it is affecting your joints maybe it might help you too.(nothing to do with it, right?) :-) Anyway, hope you both are feeling better soon. Love, Faith ('s mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2003 Report Share Posted February 23, 2003 Dear , I'm so glad that all went well. That is wonderful news. If we lived closer we would come over and keep Jeff company while you sleep. :-) With all the antibiotics do you use some probiotics to help the digestive system along? Keep us posted and give that Jeff a hug from Kendra and her family. Mom to Kendra, and Camille Southern California Update Hello one and all!! Great news! Jeff was release from the hospital Friday around noon and we arrived home safely last night around 5PM. The surgery went well and they removed all the hardware in his back and were very glad that they did. He had so much infection in there in spite of intravenous antibiotics he's been on for the last 3 months, that they said there's no way we could have gotten rid of it. The doctors feel that he NOW has the best opportunity to get rid of the infection. He did fine during surgery and recovery but during the night he lost so much blood that his blood pressure was 65/35. They ended up giving him 2 units of blood. He slept most of the next day and by Wednesday was much improved. They removed his bladder catheter on Wednesday and both the drainage tubes on Thursday. They changed his IV antibiotic to Vancomycin, and he will be on that another 6 weeks. He's still on the oral antibiotic, Rifampin, and will continue that for 6 weeks also. After we finish with the 6 weeks of antibiotics, he'll need to keep his porta-cath (central line) for another 6 months, then if all goes well, we can then have it removed. Jeff, as always, was a real trooper. He was very calm, and did everything that was asked of him. This little guy truly amazes me! When we got home last night, he was SO HAPPY to be home! He just laughed and played and giggled . . . ALL night long!! Yes, he had one continuous party! I think he probably thought we were going to leave him there, and when he realized we weren't, he was just so happy he couldn't sleep. So as of this writing (9:00PM) he's been awake for 36 hrs, straight!!! He's still going strong, Bob and I are zombies. We've tried everything, we're praying this little 'eveready energizer bunny' will crash soon. Thank you all for your love, concern and prayers. Once again, prayers were answered. We appreciate each of you and want you to know we love you. Oh, and if anyone out there is in a party mood, you are more than welcome to come on over and party with Jeff so we can get some sleep. Love and smiles, Mom or (whatever the case may be) AKA: Baker - Mom to Jeff (18 yrs. CHARGEr), Steve (19 yrs. and serving a Mission in Brazil), and others married with children of the own. Idaho, USA AKA: Jeff's Mom ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2003 Report Share Posted February 23, 2003 That's great news ! ~ Weir Mom to Kennedy, 5yr old CHARGEr, 13, 11, and wife to Graeme Saint , New Brunswick, Canada Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir CHARGE Syndrome Canada - http://www.chargesyndrome.ca Update Hello one and all!! Great news! Jeff was release from the hospital Friday around noon and we arrived home safely last night around 5PM. The surgery went well and they removed all the hardware in his back and were very glad that they did. He had so much infection in there in spite of intravenous antibiotics he's been on for the last 3 months, that they said there's no way we could have gotten rid of it. The doctors feel that he NOW has the best opportunity to get rid of the infection. He did fine during surgery and recovery but during the night he lost so much blood that his blood pressure was 65/35. They ended up giving him 2 units of blood. He slept most of the next day and by Wednesday was much improved. They removed his bladder catheter on Wednesday and both the drainage tubes on Thursday. They changed his IV antibiotic to Vancomycin, and he will be on that another 6 weeks. He's still on the oral antibiotic, Rifampin, and will continue that for 6 weeks also. After we finish with the 6 weeks of antibiotics, he'll need to keep his porta-cath (central line) for another 6 months, then if all goes well, we can then have it removed. Jeff, as always, was a real trooper. He was very calm, and did everything that was asked of him. This little guy truly amazes me! When we got home last night, he was SO HAPPY to be home! He just laughed and played and giggled . . . ALL night long!! Yes, he had one continuous party! I think he probably thought we were going to leave him there, and when he realized we weren't, he was just so happy he couldn't sleep. So as of this writing (9:00PM) he's been awake for 36 hrs, straight!!! He's still going strong, Bob and I are zombies. We've tried everything, we're praying this little 'eveready energizer bunny' will crash soon. Thank you all for your love, concern and prayers. Once again, prayers were answered. We appreciate each of you and want you to know we love you. Oh, and if anyone out there is in a party mood, you are more than welcome to come on over and party with Jeff so we can get some sleep. Love and smiles, Mom or (whatever the case may be) AKA: Baker - Mom to Jeff (18 yrs. CHARGEr), Steve (19 yrs. and serving a Mission in Brazil), and others married with children of the own. Idaho, USA AKA: Jeff's Mom ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 glad to hear all is well--I'm a little late posting--we are sick here again-- Update > Hello one and all!! > Great news! Jeff was release from the hospital Friday around noon > and we arrived home safely last night around 5PM. The surgery went well > and they removed all the hardware in his back and were very glad that > they did. He had so much infection in there in spite of intravenous > antibiotics he's been on for the last 3 months, that they said there's no > way we could have gotten rid of it. The doctors feel that he NOW has the > best opportunity to get rid of the infection. He did fine during surgery > and recovery but during the night he lost so much blood that his blood > pressure was 65/35. They ended up giving him 2 units of blood. He slept > most of the next day and by Wednesday was much improved. They removed > his bladder catheter on Wednesday and both the drainage tubes on > Thursday. They changed his IV antibiotic to Vancomycin, and he will be > on that another 6 weeks. He's still on the oral antibiotic, Rifampin, > and will continue that for 6 weeks also. After we finish with the 6 > weeks of antibiotics, he'll need to keep his porta-cath (central line) > for another 6 months, then if all goes well, we can then have it removed. > Jeff, as always, was a real trooper. He was very calm, and did > everything that was asked of him. This little guy truly amazes me! When > we got home last night, he was SO HAPPY to be home! He just laughed and > played and giggled . . . ALL night long!! Yes, he had one continuous > party! I think he probably thought we were going to leave him there, and > when he realized we weren't, he was just so happy he couldn't sleep. So > as of this writing (9:00PM) he's been awake for 36 hrs, straight!!! > He's still going strong, Bob and I are zombies. We've tried everything, > we're praying this little 'eveready energizer bunny' will crash soon. > Thank you all for your love, concern and prayers. Once again, prayers > were answered. We appreciate each of you and want you to know we love > you. Oh, and if anyone out there is in a party mood, you are more than > welcome to come on over and party with Jeff so we can get some sleep. > Love and smiles, > Mom or (whatever the case may be) > AKA: > Baker - Mom to Jeff (18 yrs. CHARGEr), Steve (19 yrs. and serving a > Mission in Brazil), and others married with children of the own. > Idaho, USA > AKA: Jeff's Mom > > > > ________________________________________________________________ > Sign Up for Juno Platinum Internet Access Today > Only $9.95 per month! > Visit www.juno.com > > Membership of this email support groups 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 CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 I'm so glad everything is working out for you and the family. By the sounds of it everything is going to move up hill from here along with lots of happiness and health for all. Good luck to you and your family Toni The damage on there and of course some thickening of the heart wall from the blood pressure. After today's Dr's apointment it hit me that being with him was slowly killing me. I know it sounds a bit dramatic to say that, but it's the truth. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 , Oh, how your update made me SMILE! I am so happy for you and your family. That is great news and you are an inspiration to those who stay in unhealthy relationships(to get out). One door closes and two doors open! Take care, Caitlin Moderator. Things (other than the money part anyway) are going so well. The kids and I are so much happier, I can't even begin to describe the weight that was lifted off of all of us when he left. It's like a different family, a different home, it's incredible, and I'm happier than I've been in, well I can't remember how long. Quote Link to comment Share on other sites More sharing options...
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