Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 , Zach is almost two and has cultured psuedomonas. I know how you feel. I hope anna has a clean culture and starts to feel better. Feel free to e-mail me about this. We just went through this in November so I can relate. sara > > i have those days to i call them my bad cf days i have not had one in a > while but the past few days i have i thought maybe it was all the holiday > hoopla got to me but then anna got sick and we had a night in the hopital > and we are waiting for the test results to see if she has Phksudonomis ( i > can never spell that one right !!) but the waiting is killing me she is only > two and i wish she could just tell me what is wring when she is sick > > michelle > mom to 4 girls caitlin 8 n/cf erin 7 n/cf > moira 3 n/cf and anna 2w/cf (unknown) > > > > > > Well, today is one of those days when my emotions have overtaken > > me. My life is not one to complain about. I have a husband who > > loves me, whom I dearly love, two wonderful children, two dogs, a > > horse, a roof over my head and food in the fridge. Bills are paid, > > the weather is beautiful, and here I sit in tears. Why? I don't > > know. Of course I know, there is a monster in my house, in my life > > and I do not like it. I want it to go away, but it won't. I try to > > protect my daughter from the things that will harm her, but I cannot > > protect her from this. Over the holidays we neglected her > > treatments and now it is time to get back on track. I take for > > granted the fact that she has made it half way through the flu > > season without even a sniffle, so missing a treatment here or there > > should be ok? I guess I am beating myself up that my baby has to go > > through 3 hours of treatments a day. When is she allowed to have a > > life? Well if you don't do the treatments, she won't have a life. > > Great, that makes me feel better. She absolutely hates doing > > treatments. Currently we are doing 28 days of Tobi, vest 20 minutes > > x2 and pulmozyme 1x a day. I have tried everything, from being the > > meanest Mom in the UNIVERSE, to bribery. Yes this is a small battle. > > How do I explain to her that if she does not do these treatments she > > will get very sick? It is very hard for me when the two of us are > > struggling and negotiating treatments to not blurt out " if you > > don't do them you could die! " But sometimes that is what I want to > > say. That is my pain, my burden. I cannot tell her this because I am > > afraid she will give up, not care, or rebel and " speed up " the > > process( not now, but perhaps in her teenage years). Natalia's post > > really touched me when she said that " she feels sad " , I don't want > > my daughter to feel sad! I don't want her to be in the position of > > where she has to fight for her life, and this just kills me. So I > > come back to reality, I do not know what is going to happen next > > week, next year, in 20 years, I have to get through today, and I > > will think about tomorrow later. Today things are good, everyone is > > happy and healthy. > > I won't apologize for rambling, I just needed to throw this out > > there. I know, I know, stay positive, don't let it get you down > > etc... but, today it has gotten me down. Have you ever had a dream > > where you are being chased and you cannot run away? Your feet move > > like a cartoon character, yet you don't go anywhere? Today, I can't > > get away. I could go to the beach, or sit out on my patio in the > > warm sun, but then I would be alone with my thoughts and right now, > > that is not a good place to be. I can't sit and watch tv, that just > > drives me up the wall. My attention span is too short. Clean the > > house, mop the floor.....yeah right. Ok, turn some " happy music " on > > really loud and clean the house and mop the floors. Or better yet, > > type to the group, throw my feelings out into cyberspace and know > > that I am not alone. Someone, somewhere will know how this feels. > > > > > > e, mom to 10 wcf and Ian 13 nocf > > > > > > > > > > > > > > ------------------------------------------- > > The opinions and information exchanged on this list should IN NO WAY > > be construed as medical advice. > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > > > ------------------------------------ > > > > > > > > > > > > ----------------------------------------------------------------- --------- > ---- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 , My son Matty is the same age as Sara's Zac and has cultured PA also. He cultured it back in Oct. He is now on Tobi 3x/day plus pulmicort and ventilin. He gets wheezy. He has a cough again, on and off. I had him sleep with me last night so I could monitor him. He slept very well. Trying to give him extra CPT when I can, try to fit that in with 2 other boys. You can email me anytime too, I know how your feeling and boy does it feel good to be able to tell you that and mean it. I don't mean that I am happy that he had PA but other people can't understand but I can. Do I make any sense. SARA, I have a gown for Zac, tell me where to send it to. I just hope you like it. Cheryl Re: (unknown)/ , Zach is almost two and has cultured psuedomonas. I know how you feel. I hope anna has a clean culture and starts to feel better. Feel free to e-mail me about this. We just went through this in November so I can relate. sara > > i have those days to i call them my bad cf days i have not had one in a > while but the past few days i have i thought maybe it was all the holiday > hoopla got to me but then anna got sick and we had a night in the hopital > and we are waiting for the test results to see if she has Phksudonomis ( i > can never spell that one right !!) but the waiting is killing me she is only > two and i wish she could just tell me what is wring when she is sick > > michelle > mom to 4 girls caitlin 8 n/cf erin 7 n/cf > moira 3 n/cf and anna 2w/cf (unknown) > > > > > > Well, today is one of those days when my emotions have overtaken > > me. My life is not one to complain about. I have a husband who > > loves me, whom I dearly love, two wonderful children, two dogs, a > > horse, a roof over my head and food in the fridge. Bills are paid, > > the weather is beautiful, and here I sit in tears. Why? I don't > > know. Of course I know, there is a monster in my house, in my life > > and I do not like it. I want it to go away, but it won't. I try to > > protect my daughter from the things that will harm her, but I cannot > > protect her from this. Over the holidays we neglected her > > treatments and now it is time to get back on track. I take for > > granted the fact that she has made it half way through the flu > > season without even a sniffle, so missing a treatment here or there > > should be ok? I guess I am beating myself up that my baby has to go > > through 3 hours of treatments a day. When is she allowed to have a > > life? Well if you don't do the treatments, she won't have a life. > > Great, that makes me feel better. She absolutely hates doing > > treatments. Currently we are doing 28 days of Tobi, vest 20 minutes > > x2 and pulmozyme 1x a day. I have tried everything, from being the > > meanest Mom in the UNIVERSE, to bribery. Yes this is a small battle. > > How do I explain to her that if she does not do these treatments she > > will get very sick? It is very hard for me when the two of us are > > struggling and negotiating treatments to not blurt out " if you > > don't do them you could die! " But sometimes that is what I want to > > say. That is my pain, my burden. I cannot tell her this because I am > > afraid she will give up, not care, or rebel and " speed up " the > > process( not now, but perhaps in her teenage years). Natalia's post > > really touched me when she said that " she feels sad " , I don't want > > my daughter to feel sad! I don't want her to be in the position of > > where she has to fight for her life, and this just kills me. So I > > come back to reality, I do not know what is going to happen next > > week, next year, in 20 years, I have to get through today, and I > > will think about tomorrow later. Today things are good, everyone is > > happy and healthy. > > I won't apologize for rambling, I just needed to throw this out > > there. I know, I know, stay positive, don't let it get you down > > etc... but, today it has gotten me down. Have you ever had a dream > > where you are being chased and you cannot run away? Your feet move > > like a cartoon character, yet you don't go anywhere? Today, I can't > > get away. I could go to the beach, or sit out on my patio in the > > warm sun, but then I would be alone with my thoughts and right now, > > that is not a good place to be. I can't sit and watch tv, that just > > drives me up the wall. My attention span is too short. Clean the > > house, mop the floor.....yeah right. Ok, turn some " happy music " on > > really loud and clean the house and mop the floors. Or better yet, > > type to the group, throw my feelings out into cyberspace and know > > that I am not alone. Someone, somewhere will know how this feels. > > > > > > e, mom to 10 wcf and Ian 13 nocf > > > > > > > > > > > > > > ------------------------------------------- > > The opinions and information exchanged on this list should IN NO WAY > > be construed as medical advice. > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > > > ------------------------------------ > > > > > > > > > > > > ----------------------------------------------------------------- --------- > ---- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Thanks cheryl, I can't wait to see it. I sent you an e-mail with my address. Sara > > > > i have those days to i call them my bad cf days i have not had > one in a > > while but the past few days i have i thought maybe it was all the > holiday > > hoopla got to me but then anna got sick and we had a night in > the hopital > > and we are waiting for the test results to see if she has > Phksudonomis ( i > > can never spell that one right !!) but the waiting is killing me > she is only > > two and i wish she could just tell me what is wring when she is > sick > > > > michelle > > mom to 4 girls caitlin 8 n/cf erin 7 n/cf > > moira 3 n/cf and anna 2w/cf (unknown) > > > > > > > > > Well, today is one of those days when my emotions have > overtaken > > > me. My life is not one to complain about. I have a husband > who > > > loves me, whom I dearly love, two wonderful children, two > dogs, a > > > horse, a roof over my head and food in the fridge. Bills are > paid, > > > the weather is beautiful, and here I sit in tears. Why? I > don't > > > know. Of course I know, there is a monster in my house, in > my life > > > and I do not like it. I want it to go away, but it won't. I > try to > > > protect my daughter from the things that will harm her, but > I cannot > > > protect her from this. Over the holidays we neglected her > > > treatments and now it is time to get back on track. I take > for > > > granted the fact that she has made it half way through the > flu > > > season without even a sniffle, so missing a treatment here > or there > > > should be ok? I guess I am beating myself up that my baby > has to go > > > through 3 hours of treatments a day. When is she allowed to > have a > > > life? Well if you don't do the treatments, she won't have a > life. > > > Great, that makes me feel better. She absolutely hates doing > > > treatments. Currently we are doing 28 days of Tobi, vest 20 > minutes > > > x2 and pulmozyme 1x a day. I have tried everything, from > being the > > > meanest Mom in the UNIVERSE, to bribery. Yes this is a small > battle. > > > How do I explain to her that if she does not do these > treatments she > > > will get very sick? It is very hard for me when the two of > us are > > > struggling and negotiating treatments to not blurt out " if > you > > > don't do them you could die! " But sometimes that is what I > want to > > > say. That is my pain, my burden. I cannot tell her this > because I am > > > afraid she will give up, not care, or rebel and " speed up " > the > > > process( not now, but perhaps in her teenage years). > Natalia's post > > > really touched me when she said that " she feels sad " , I > don't want > > > my daughter to feel sad! I don't want her to be in the > position of > > > where she has to fight for her life, and this just kills me. > So I > > > come back to reality, I do not know what is going to happen > next > > > week, next year, in 20 years, I have to get through today, > and I > > > will think about tomorrow later. Today things are good, > everyone is > > > happy and healthy. > > > I won't apologize for rambling, I just needed to throw > this out > > > there. I know, I know, stay positive, don't let it get you > down > > > etc... but, today it has gotten me down. Have you ever had a > dream > > > where you are being chased and you cannot run away? Your > feet move > > > like a cartoon character, yet you don't go anywhere? Today, > I can't > > > get away. I could go to the beach, or sit out on my patio in > the > > > warm sun, but then I would be alone with my thoughts and > right now, > > > that is not a good place to be. I can't sit and watch tv, > that just > > > drives me up the wall. My attention span is too short. Clean > the > > > house, mop the floor.....yeah right. Ok, turn some " happy > music " on > > > really loud and clean the house and mop the floors. Or > better yet, > > > type to the group, throw my feelings out into cyberspace and > know > > > that I am not alone. Someone, somewhere will know how this > feels. > > > > > > > > > e, mom to 10 wcf and Ian 13 nocf > > > > > > > > > > > > > > > > > > > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > > > be construed as medical advice. > > > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY > MEDICATIONS OR > > TREATMENTS. > > > > > > ------------------------------------ > > > > > > > > > > > > > > > > > > > --------------------------------------------------------------- -- > --------- > > ---- > > > Quote Link to comment Share on other sites More sharing options...
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