Guest guest Posted May 24, 2007 Report Share Posted May 24, 2007 Can i vent for a minute??????? OK, 's trach came out 4 years ago, she hasnt been suctioned in over 5 years. The ENT encouraged us to teach her to cough and clear her own airway, she can cough so strong she used to send projectiles across the room out of her trach! I owe a lot of credit to her being decannulated b/c of this. She has always hated being suctioned. After the trach came out we carried the suction machine with us for another year, for emergency purposes. Still never used it. still attends school with her own nurse, b/c of secretions, feeding tube and her heart. Her school nurse gets approached yesterday by the Speech Therapist who says, " why arent you carrying a suction machine? " . We havent in over 2 years. I even packed it away at home. is having a bad allergy season, she is coughing, but coughing is good, she is clearing her own airway. It is not in her lungs. Then today, the school nurse approaches one to one nurse and says it has been brought to her attention that may need a suction machine. " If mom does not have or want one, the school could buy one. " . I do not want suctioned, her doctors know we dont suction. She hates it and doesn't need it. ly i dont think the Speech Therapist is a nurse. OK maybe I am a bit sensitive, but I have really had a bad year. It is the same Speech therapist that is worried that has lost weight. Yes she has lost weight, BUT, i talk to the GI doctor regularly, the pediatrican is not worried. we saw an endocronolgist last week, talked about CHARGE, growth issues etc. We are having some more blood work done next week. SO we are on top of it. The Speech therapists says " mom doesn't seem to be worried " ! I am on top of my daughter more than anybody I know. (i dont know all of you!!!) OK, I am done venting for now. thanks for listening. Cathie, 's mom 11yr CHARGEr ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2007 Report Share Posted May 24, 2007 Cathie- I hear your frustration. You know, we get so used to all this stuff that we can care in a really big way without appearing to be worried. You know, another person who's typical child suddenly had some weight loss might be " acting " worried. But we take it all in stride - which can make us appear to be indifferent. Do you think that might be the case with the SLP? Maybe she just doesn't understand that crisis looks different when it becomes our norm. I think you are absolutely right to demand no suction at school. Isn't that something to be ordered by a dr?? Not the school nurse and not the SLP. They are way out of bounds, I think. Now, this is out of my realm of experience so I could be wrong. But my gut is with you. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2007 Report Share Posted May 24, 2007 Sounds like someone is seriously overstepping their bounds...I would set her straight quickly... > > Can i vent for a minute??????? > OK, 's trach came out 4 years ago, she hasnt been suctioned in over 5 > > years. The ENT encouraged us to teach her to cough and clear her own > airway, > she can cough so strong she used to send projectiles across the room out > of > her trach! I owe a lot of credit to her being decannulated b/c of this. > She > has always hated being suctioned. > After the trach came out we carried the suction machine with us for > another > year, for emergency purposes. Still never used it. > still attends school with her own nurse, b/c of secretions, feeding > tube and her heart. Her school nurse gets approached yesterday by the > Speech > Therapist who says, " why arent you carrying a suction machine? " . We havent > in > over 2 years. I even packed it away at home. is having a bad allergy > > season, she is coughing, but coughing is good, she is clearing her own > airway. It is not in her lungs. > Then today, the school nurse approaches one to one nurse and says it has > been brought to her attention that may need a suction machine. " If > mom > does not have or want one, the school could buy one. " . I do not want > > suctioned, her doctors know we dont suction. She hates it and doesn't need > it. > ly i dont think the Speech Therapist is a nurse. > OK maybe I am a bit sensitive, but I have really had a bad year. It is the > > same Speech therapist that is worried that has lost weight. Yes she > has lost weight, BUT, i talk to the GI doctor regularly, the pediatrican > is not > worried. we saw an endocronolgist last week, talked about CHARGE, growth > issues etc. We are having some more blood work done next week. SO we are > on > top of it. The Speech therapists says " mom doesn't seem to be worried " ! I > am > on top of my daughter more than anybody I know. (i dont know all of > you!!!) > > OK, I am done venting for now. thanks for listening. > > Cathie, 's mom 11yr CHARGEr > > ************************************** See what's free at > http://www.aol.com. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2007 Report Share Posted May 24, 2007 MIchele, what a great phrase: " ...doesn't understand that crisis looks different when it becomes our norm. " And CAthy, I am with Michele, stick to your guns. You know where you have come from; how strong is; and the basic: YOU KNOW HER BEST AND WHAT SHE NEEDS. xo pam RE: more school issues Cathie- I hear your frustration. You know, we get so used to all this stuff that we can care in a really big way without appearing to be worried. You know, another person who's typical child suddenly had some weight loss might be " acting " worried. But we take it all in stride - which can make us appear to be indifferent. Do you think that might be the case with the SLP? Maybe she just doesn't understand that crisis looks different when it becomes our norm. I think you are absolutely right to demand no suction at school. Isn't that something to be ordered by a dr?? Not the school nurse and not the SLP. They are way out of bounds, I think. Now, this is out of my realm of experience so I could be wrong. But my gut is with you. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2007 Report Share Posted May 25, 2007 that person sounds like she needs to have something up her bum of course a charger is gonna cough more in spring with alergies has she not heard bout stuff like hayfeaver mum has that she doesnt need to suction for that lol hugs ellen in aus who just used the charge as a way to tell a sales caller off > > MIchele, > what a great phrase: " ...doesn't understand that crisis looks different > when it becomes our > norm. " > > And CAthy, I am with Michele, stick to your guns. You know where you have > come from; how strong is; and the basic: YOU KNOW HER BEST AND WHAT > SHE NEEDS. > xo > pam > > RE: more school issues > > Cathie- > > I hear your frustration. You know, we get so used to all this stuff that > we > can care in a really big way without appearing to be worried. You know, > another person who's typical child suddenly had some weight loss might be > " acting " worried. But we take it all in stride - which can make us appear > to be indifferent. Do you think that might be the case with the SLP? Maybe > she just doesn't understand that crisis looks different when it becomes > our > norm. > > I think you are absolutely right to demand no suction at school. Isn't > that > something to be ordered by a dr?? Not the school nurse and not the SLP. > They are way out of bounds, I think. Now, this is out of my realm of > experience so I could be wrong. But my gut is with you. > > Michele W > Aubrie's mom > > Quote Link to comment Share on other sites More sharing options...
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