Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 It's better to eat on the high side...drink LOTS of water , walk....ANNA Question I am confused somewhat. Here is why:In eating the lowest points possible each day, itseemed yesterday (1st day) that I ate so much food andwas full most of the time. I ate my minimum points asit states that is important to fuel the body withneeded points to lose weight. How will the results beas I ate lunch and dinner previously and now I ameating proper and more than I did before? Can you see why I feel confused and afraid that I willgain weight instead of lose? Help me out here!Thanks.Lynn__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 It's better to eat on the high side...drink LOTS of water , walk....ANNA Question I am confused somewhat. Here is why:In eating the lowest points possible each day, itseemed yesterday (1st day) that I ate so much food andwas full most of the time. I ate my minimum points asit states that is important to fuel the body withneeded points to lose weight. How will the results beas I ate lunch and dinner previously and now I ameating proper and more than I did before? Can you see why I feel confused and afraid that I willgain weight instead of lose? Help me out here!Thanks.Lynn__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 It's better to eat on the high side...drink LOTS of water , walk....ANNA Question I am confused somewhat. Here is why:In eating the lowest points possible each day, itseemed yesterday (1st day) that I ate so much food andwas full most of the time. I ate my minimum points asit states that is important to fuel the body withneeded points to lose weight. How will the results beas I ate lunch and dinner previously and now I ameating proper and more than I did before? Can you see why I feel confused and afraid that I willgain weight instead of lose? Help me out here!Thanks.Lynn__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 Lynn, The leaders tell us to eat at the high end of our range of points to loose. I think it has to do with the combination of foods and eating healthy. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 Lynn, The leaders tell us to eat at the high end of our range of points to loose. I think it has to do with the combination of foods and eating healthy. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2001 Report Share Posted October 10, 2001 It's very important to eat the minimum points everyday so your body doesn't think it's starving. People often think that not eating is better - and it's not. That really messes with your metabolism. The less you eat the less your body thinks it needs to work and the more it needs to hold on to all the fat being taken in. Kind of like hibernation. Remember, our DNA goes way back. Doesn't matter what size a person is - starving is starving and we are made to survive. Sure, eventually a person will lose by not eating but it's not fat being lost, it's muscle. Eating the right foods, in moderation, is the best thing we can do for our bodies. I need to eat at the top of my point range to lose weight. If I don't, even just for 2 days during the week, I don't lose. Metabolisms are a strange thing - and so different for everyone!! This is a life-long change. What we are teaching ourselves now will stay with us forever. I hope I haven't confused you more!! Keep eating within your point range - journal everything - drink your water - exercise when you can - and you'll be fine. You're doing great Lynn!! ~~ I am confused somewhat. Here is why:In eating the lowest points possible each day, it seemed yesterday (1st day) that I ate so much food and was full most of the time. I ate my minimum points as it states that is important to fuel the body with needed points to lose weight. How will the results be as I ate lunch and dinner previously and now I am eating proper and more than I did before? Can you see why I feel confused and afraid that I will gain weight instead of lose? Help me out here!Thanks.Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 Bonnie, When I hear things like this it breaks my heart. I have been in that horrible position of " behavior " and it is such a helpless feeling. It is like there is no where to turn. I think it is a shame that they would speak of him being kicked out. I should hope they try all options first before they resort to that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 Hi Sue, With our Dr.'s, they always take us back to a room to wait for the dr. Our pediatrician is great and we have never had to wait out in the waiting room . It seemed for the longest time, everytime we took her to Children's for a appt., she would automatically pick up something there and get sick! As she has gotten older, that has gotten better but I still don't like to expose her to that environment. I avoid that route now and take her to one of the satelites so that way we aren't in the hospital at all!! I would sit down and talk with the dr.s about this and I dont see why they can't just take her back and put her in a examining room to wait til the dr. can you see you guys!! Tia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 Hi Sue, With our Dr.'s, they always take us back to a room to wait for the dr. Our pediatrician is great and we have never had to wait out in the waiting room . It seemed for the longest time, everytime we took her to Children's for a appt., she would automatically pick up something there and get sick! As she has gotten older, that has gotten better but I still don't like to expose her to that environment. I avoid that route now and take her to one of the satelites so that way we aren't in the hospital at all!! I would sit down and talk with the dr.s about this and I dont see why they can't just take her back and put her in a examining room to wait til the dr. can you see you guys!! Tia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 If this is an ongoing problem, many doctors will work with you to come in the back entrance and go straight to a room or to at least to let the front desk folks know to send you straight back. UTI's are not caused by being in the waiting room with other kids, but an URI (respiratory) infection could and that is just what she doesn't need. If my pediatrician were not willing to work with me on this, I would find a new one! (Personal opinion) Kim Lauger ---------- > >To: " '\ " CHARGE\ " ' " <CHARGE > >Subject: Question >Date: Fri, Jul 12, 2002, 2:26 PM > > I have a question. What do all of you do with your charge kids when you > take them to the doctor? Regarding their compromised immune system and > sitting in the waiting room with other sick kids. Sierra got out of the > hospital for one day and the next day she had an appointment to go to the > pediatrician. The waiting room was very small and there were sick children > with the flu. The receptionist could see that Sierra was attached to 4 > machines and oxygen but left them in the room with the sick children. > Needless to say my son and daughter in law were very upset. After the > appointment they put Sierra back in the hospital with a UTI, high fever and > fluid on the lungs due to her heart having to work so hard to fight the > infection. Unfortunately the one night she got to be home was miserable for > all of them. The doctors are going to have a meeting the beginning of next > week to determine when her heart surgery is going to performed. They are > saying it is going to be very soon. Much sooner than they wanted it to be. > > Sue, Grandma to Sierra 10 weeks > > > 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 12, 2002 Report Share Posted July 12, 2002 If this is an ongoing problem, many doctors will work with you to come in the back entrance and go straight to a room or to at least to let the front desk folks know to send you straight back. UTI's are not caused by being in the waiting room with other kids, but an URI (respiratory) infection could and that is just what she doesn't need. If my pediatrician were not willing to work with me on this, I would find a new one! (Personal opinion) Kim Lauger ---------- > >To: " '\ " CHARGE\ " ' " <CHARGE > >Subject: Question >Date: Fri, Jul 12, 2002, 2:26 PM > > I have a question. What do all of you do with your charge kids when you > take them to the doctor? Regarding their compromised immune system and > sitting in the waiting room with other sick kids. Sierra got out of the > hospital for one day and the next day she had an appointment to go to the > pediatrician. The waiting room was very small and there were sick children > with the flu. The receptionist could see that Sierra was attached to 4 > machines and oxygen but left them in the room with the sick children. > Needless to say my son and daughter in law were very upset. After the > appointment they put Sierra back in the hospital with a UTI, high fever and > fluid on the lungs due to her heart having to work so hard to fight the > infection. Unfortunately the one night she got to be home was miserable for > all of them. The doctors are going to have a meeting the beginning of next > week to determine when her heart surgery is going to performed. They are > saying it is going to be very soon. Much sooner than they wanted it to be. > > Sue, Grandma to Sierra 10 weeks > > > 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 12, 2002 Report Share Posted July 12, 2002 If this is an ongoing problem, many doctors will work with you to come in the back entrance and go straight to a room or to at least to let the front desk folks know to send you straight back. UTI's are not caused by being in the waiting room with other kids, but an URI (respiratory) infection could and that is just what she doesn't need. If my pediatrician were not willing to work with me on this, I would find a new one! (Personal opinion) Kim Lauger ---------- > >To: " '\ " CHARGE\ " ' " <CHARGE > >Subject: Question >Date: Fri, Jul 12, 2002, 2:26 PM > > I have a question. What do all of you do with your charge kids when you > take them to the doctor? Regarding their compromised immune system and > sitting in the waiting room with other sick kids. Sierra got out of the > hospital for one day and the next day she had an appointment to go to the > pediatrician. The waiting room was very small and there were sick children > with the flu. The receptionist could see that Sierra was attached to 4 > machines and oxygen but left them in the room with the sick children. > Needless to say my son and daughter in law were very upset. After the > appointment they put Sierra back in the hospital with a UTI, high fever and > fluid on the lungs due to her heart having to work so hard to fight the > infection. Unfortunately the one night she got to be home was miserable for > all of them. The doctors are going to have a meeting the beginning of next > week to determine when her heart surgery is going to performed. They are > saying it is going to be very soon. Much sooner than they wanted it to be. > > Sue, Grandma to Sierra 10 weeks > > > 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 13, 2002 Report Share Posted July 13, 2002 Sue, I would just INSIST that they put me in a separate room, get Sierra's doc to work with mom & dad to get the hospital to cooperate. If not, you have to use alternate tactics (which I have MYSELF done once before). When you register, tell them she was exposed to chicken pox or measles in the past week or so and she should probably go into an isolation room. Sometimes, you have to take matters into your own hands....it's for the health of our children... ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Question I have a question. What do all of you do with your charge kids when you take them to the doctor? Regarding their compromised immune system and sitting in the waiting room with other sick kids. Sierra got out of the hospital for one day and the next day she had an appointment to go to the pediatrician. The waiting room was very small and there were sick children with the flu. The receptionist could see that Sierra was attached to 4 machines and oxygen but left them in the room with the sick children. Needless to say my son and daughter in law were very upset. After the appointment they put Sierra back in the hospital with a UTI, high fever and fluid on the lungs due to her heart having to work so hard to fight the infection. Unfortunately the one night she got to be home was miserable for all of them. The doctors are going to have a meeting the beginning of next week to determine when her heart surgery is going to performed. They are saying it is going to be very soon. Much sooner than they wanted it to be. Sue, Grandma to Sierra 10 weeks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 Sue, I would just INSIST that they put me in a separate room, get Sierra's doc to work with mom & dad to get the hospital to cooperate. If not, you have to use alternate tactics (which I have MYSELF done once before). When you register, tell them she was exposed to chicken pox or measles in the past week or so and she should probably go into an isolation room. Sometimes, you have to take matters into your own hands....it's for the health of our children... ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Question I have a question. What do all of you do with your charge kids when you take them to the doctor? Regarding their compromised immune system and sitting in the waiting room with other sick kids. Sierra got out of the hospital for one day and the next day she had an appointment to go to the pediatrician. The waiting room was very small and there were sick children with the flu. The receptionist could see that Sierra was attached to 4 machines and oxygen but left them in the room with the sick children. Needless to say my son and daughter in law were very upset. After the appointment they put Sierra back in the hospital with a UTI, high fever and fluid on the lungs due to her heart having to work so hard to fight the infection. Unfortunately the one night she got to be home was miserable for all of them. The doctors are going to have a meeting the beginning of next week to determine when her heart surgery is going to performed. They are saying it is going to be very soon. Much sooner than they wanted it to be. Sue, Grandma to Sierra 10 weeks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 Thanks Kim. No, Sierra had already had the UTI that is what was giving her the high fever all night along. They should have never released her from the hospital until their culture grew and they knew for certain Sierra was well. My daughter in law was concerned for other times after Sierra is out of the hospital when she is healthy that she may get sick from another child that is there because they are sick. Your opinion is the same as mine and my kids. My son is going to call the doctor and talk to her personally and see what she will do to accommodate them. If she doesn't agree they will find another doctor. This doctor was recommended by the NICU doctor at the hospital. I guess she did her residency at the hospital Sierra is in. She is in Children's hospital of LA. Question >Date: Fri, Jul 12, 2002, 2:26 PM > > I have a question. What do all of you do with your charge kids when you > take them to the doctor? Regarding their compromised immune system and > sitting in the waiting room with other sick kids. Sierra got out of the > hospital for one day and the next day she had an appointment to go to the > pediatrician. The waiting room was very small and there were sick children > with the flu. The receptionist could see that Sierra was attached to 4 > machines and oxygen but left them in the room with the sick children. > Needless to say my son and daughter in law were very upset. After the > appointment they put Sierra back in the hospital with a UTI, high fever and > fluid on the lungs due to her heart having to work so hard to fight the > infection. Unfortunately the one night she got to be home was miserable for > all of them. The doctors are going to have a meeting the beginning of next > week to determine when her heart surgery is going to performed. They are > saying it is going to be very soon. Much sooner than they wanted it to be. > > Sue, Grandma to Sierra 10 weeks > > > 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 13, 2002 Report Share Posted July 13, 2002 Thanks Kim. No, Sierra had already had the UTI that is what was giving her the high fever all night along. They should have never released her from the hospital until their culture grew and they knew for certain Sierra was well. My daughter in law was concerned for other times after Sierra is out of the hospital when she is healthy that she may get sick from another child that is there because they are sick. Your opinion is the same as mine and my kids. My son is going to call the doctor and talk to her personally and see what she will do to accommodate them. If she doesn't agree they will find another doctor. This doctor was recommended by the NICU doctor at the hospital. I guess she did her residency at the hospital Sierra is in. She is in Children's hospital of LA. Question >Date: Fri, Jul 12, 2002, 2:26 PM > > I have a question. What do all of you do with your charge kids when you > take them to the doctor? Regarding their compromised immune system and > sitting in the waiting room with other sick kids. Sierra got out of the > hospital for one day and the next day she had an appointment to go to the > pediatrician. The waiting room was very small and there were sick children > with the flu. The receptionist could see that Sierra was attached to 4 > machines and oxygen but left them in the room with the sick children. > Needless to say my son and daughter in law were very upset. After the > appointment they put Sierra back in the hospital with a UTI, high fever and > fluid on the lungs due to her heart having to work so hard to fight the > infection. Unfortunately the one night she got to be home was miserable for > all of them. The doctors are going to have a meeting the beginning of next > week to determine when her heart surgery is going to performed. They are > saying it is going to be very soon. Much sooner than they wanted it to be. > > Sue, Grandma to Sierra 10 weeks > > > 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 13, 2002 Report Share Posted July 13, 2002 Thanks Kim. No, Sierra had already had the UTI that is what was giving her the high fever all night along. They should have never released her from the hospital until their culture grew and they knew for certain Sierra was well. My daughter in law was concerned for other times after Sierra is out of the hospital when she is healthy that she may get sick from another child that is there because they are sick. Your opinion is the same as mine and my kids. My son is going to call the doctor and talk to her personally and see what she will do to accommodate them. If she doesn't agree they will find another doctor. This doctor was recommended by the NICU doctor at the hospital. I guess she did her residency at the hospital Sierra is in. She is in Children's hospital of LA. Question >Date: Fri, Jul 12, 2002, 2:26 PM > > I have a question. What do all of you do with your charge kids when you > take them to the doctor? Regarding their compromised immune system and > sitting in the waiting room with other sick kids. Sierra got out of the > hospital for one day and the next day she had an appointment to go to the > pediatrician. The waiting room was very small and there were sick children > with the flu. The receptionist could see that Sierra was attached to 4 > machines and oxygen but left them in the room with the sick children. > Needless to say my son and daughter in law were very upset. After the > appointment they put Sierra back in the hospital with a UTI, high fever and > fluid on the lungs due to her heart having to work so hard to fight the > infection. Unfortunately the one night she got to be home was miserable for > all of them. The doctors are going to have a meeting the beginning of next > week to determine when her heart surgery is going to performed. They are > saying it is going to be very soon. Much sooner than they wanted it to be. > > Sue, Grandma to Sierra 10 weeks > > > 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 13, 2002 Report Share Posted July 13, 2002 what we do is tell the doctor (or when you call to make the appintment) that you have a med.fragile child and you cant be kept waiting in the waiting room and taking chances like that the other thing that I always do is make appointments that are the first one of the day I always insist on it you get in and out faster ...... http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 what we do is tell the doctor (or when you call to make the appintment) that you have a med.fragile child and you cant be kept waiting in the waiting room and taking chances like that the other thing that I always do is make appointments that are the first one of the day I always insist on it you get in and out faster ...... http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 another trick I do is tell the other parents of " busy " children (you know the ones that just want to see the baby) that your child has something VERY CONTAGIOUS I tell them thats why he has the trach they all grab their kids and run hahaha http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 another trick I do is tell the other parents of " busy " children (you know the ones that just want to see the baby) that your child has something VERY CONTAGIOUS I tell them thats why he has the trach they all grab their kids and run hahaha http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 Dear Sue: Our daughter has two pediatrician's, and I believe both have 'bent some rules' the past 21 mo. During the first year, one of the pediatricians made four house visits. However, wasn't ill / contagious. He has come to our home for pre-op and well- '' checkups (as he has always wanted to stay well/be healthy). There have been a few times that we have needed to bring her in, first apt. of the day (he would schedule us 30 min. before the clinic doors opened) or he/they have taken her in after clinic hours. We haven't had to wait in a room with sick children, as they thankfully 'protect' well. Always have the docs thoroughly wash there hands in your presence, before they handle Sierra. With the ped. visits to our home, this has been so wonderful! It has allowed (as well us) to get to know him and visa versa. has found trust in him and now knows he's not out, just to cause her stress. He has been very supportive as well. And now loves playing with his ties during an exam or such : ) The best for Sierra, as your family anticipates her heart surgery. Be persistent about finding/or having a supportive, reliable 'team,' that also understand your needs and comfort. A listening and learning team...The Charge Manual is an exceptional resource, to share with all caregivers. God Bless, Jan H. Mom to (21 mo.) CHARGE / deaf/blind Wife to MN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 We didn't have much problem with catching other illnesses, but more with equipment problems. We were granted special appointment status. This occurred because of running out of oxygen twice (at leat) and having to have staff take us to refill in the tank. We also lost battery to the PulmoAid that supplied the pressure for the CPAP to 's trach, and the suction machine. (Can you say NIGHTMARE visits?) They were like, " Oh we can keep her going on hospital equipment " - at a fee, of course. My response was, " And I'm supposed to get her home...how?? " When we went to the hospital a lot in the early days for follow-up visits, we insisted on the first appointment of the day. We often asked to arrive 15 minutes before actual opening of the clinic area. Once we explained the reasons - and they experienced it first hand - they were more than willing to help out. Friends in CHARGE, Marilyn Ogan Mom of Kenny (12, ADD) and (9, CHARGE+) Wife of Rick Re: Question > what we do is tell the doctor (or when you call to make the appintment) > that you have a med.fragile child and you cant be kept waiting in the > waiting room and taking chances like that the other thing that I always > do is make appointments that are the first one of the day I always > insist on it you get in and out faster ...... > > http://community.webtv.net/maryechick12/ > http://community.webtv.net/maryechick12/pets > > > > 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 13, 2002 Report Share Posted July 13, 2002 We didn't have much problem with catching other illnesses, but more with equipment problems. We were granted special appointment status. This occurred because of running out of oxygen twice (at leat) and having to have staff take us to refill in the tank. We also lost battery to the PulmoAid that supplied the pressure for the CPAP to 's trach, and the suction machine. (Can you say NIGHTMARE visits?) They were like, " Oh we can keep her going on hospital equipment " - at a fee, of course. My response was, " And I'm supposed to get her home...how?? " When we went to the hospital a lot in the early days for follow-up visits, we insisted on the first appointment of the day. We often asked to arrive 15 minutes before actual opening of the clinic area. Once we explained the reasons - and they experienced it first hand - they were more than willing to help out. Friends in CHARGE, Marilyn Ogan Mom of Kenny (12, ADD) and (9, CHARGE+) Wife of Rick Re: Question > what we do is tell the doctor (or when you call to make the appintment) > that you have a med.fragile child and you cant be kept waiting in the > waiting room and taking chances like that the other thing that I always > do is make appointments that are the first one of the day I always > insist on it you get in and out faster ...... > > http://community.webtv.net/maryechick12/ > http://community.webtv.net/maryechick12/pets > > > > 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 13, 2002 Report Share Posted July 13, 2002 Thanks for the tip Robin, that's a new one for our repetoire...~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Re: Question We do not leave Ally in the waiting room with the other kids. Although she is not immune compromised a simple cold can quickly turn to something much worse so we do not take out chances. Anytime we are in a dr's office or hospital I tell the check in person that Ally is nutropenic (immune system compromised) and ask where I can take her to be isolated. I do not pose it to them as an option. Just say " Sierra is nutropenic - where can I take her to be isolated " . This " nutropenic " seems to be some kind of magic word. My pharmacist friend recommended I start telling people in the medical world that so that they would be more careful with Ally and also to assure a private room in the hospital. It works wonderfully. Robin mom to Ally CHARGE almost 4 Quote Link to comment Share on other sites More sharing options...
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