Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 Dear Rosemary, Hopefully she will respond to Cipro and get feeling better soon. We went through an episode about 3 years ago, one antibiotic after the other, pfts down in the low 60s. They went ahead and admitted my daughter for about 2 weeks, plus 2 weeks home IVs (mean ol psued was acting up). At first things didn't get better. They decided to stop the IVs and put her on Tobi, for the first 6 months, nothing much happen, still low 60s, but then about the 9th month, we went to the upper 70s and now (drum roll) we are in the 80s!!! Yahoo!! . We still haven't made the 90s like we use to, but I will take the 80s anytime over the 60s. Hope this will give you a glimmer of hope through this all. Hang in there!!! Christi (mom to 3 crazy and wild teenagers). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 Rosemary, I am here for you my dear friend. I had no idea you had this going on!! Paige Longest Day > Today has been such a long taxing day........everyone this morning had that > sad look back in their eyes.... > Yesterday my husband (I made HIM deal with and the Drs.) took my > 12 yr. to CF Center. Her PFT's went down AGAIN........they doubled her cipro > dose and want her back in 2 weeks....She has spent June on Cipro, July on > Zithomax and August on Levaquin. I am concerned because: > 1. She is not responding to antibodics. > 2. She is still coughing to vomiting and bringing up huge > amounts........even though she always brings stuff up...... > > Does any one know what I should do? or even think? I mean to me her > baseline has changed...Do you think its permadent? Damn......please lie to > me............. > > > > Rosemary in New York with 3 children with CF - they are 12, 9.8, 5.9...I > coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you > ready for this - TOBI after their medication! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 Rosemary, I am so sorry that you had such a bad day yesterday. Did your doctors' do IV's with the inhaled antibiotics? Hugs! Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 Rosemary, I am so sorry that you had such a bad day yesterday. Did your doctors' do IV's with the inhaled antibiotics? Hugs! Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 DEAR ROSEMARY., I AM SO SORRY TO HEAR THIS . I KNOW WITH ALL THAT IS COMING OUT WITH MEDS, ETC. THEY WILL FIND ON something THAT WILL FIGHT THOSE DAMN bugs... BLESS YOU .yOU know I HAVE YOU & YOUR PRECIOUS FAMILY ON OUR NATIONAL PRAYER CHANGE SO A GREAT MANY FOLKS WHO LOVE YOU & THE lord ARE ROOTING FOR YOU ALL ..pLEASE LET ME KNOW AS YOU CAN ... LOVE & HUGS, GrandmomBEv Re: Longest Day Rosemary, I am here for you my dear friend. I had no idea you had this going on!! Paige Longest Day > Today has been such a long taxing day........everyone this morning had that > sad look back in their eyes.... > Yesterday my husband (I made HIM deal with and the Drs.) took my > 12 yr. to CF Center. Her PFT's went down AGAIN........they doubled her cipro > dose and want her back in 2 weeks....She has spent June on Cipro, July on > Zithomax and August on Levaquin. I am concerned because: > 1. She is not responding to antibodics. > 2. She is still coughing to vomiting and bringing up huge > amounts........even though she always brings stuff up...... > > Does any one know what I should do? or even think? I mean to me her > baseline has changed...Do you think its permadent? Damn......please lie to > me............. > > > > Rosemary in New York with 3 children with CF - they are 12, 9.8, 5.9...I > coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you > ready for this - TOBI after their medication! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 It seems to me that this type of email would be best sent privately. Of course, the moerators may not consider this a religious email. Lori in Florida Longest Day > Today has been such a long taxing day........everyone this morning had that > sad look back in their eyes.... > Yesterday my husband (I made HIM deal with and the Drs.) took my > 12 yr. to CF Center. Her PFT's went down AGAIN........they doubled her cipro > dose and want her back in 2 weeks....She has spent June on Cipro, July on > Zithomax and August on Levaquin. I am concerned because: > 1. She is not responding to antibodics. > 2. She is still coughing to vomiting and bringing up huge > amounts........even though she always brings stuff up...... > > Does any one know what I should do? or even think? I mean to me her > baseline has changed...Do you think its permadent? Damn......please lie to > me............. > > > > Rosemary in New York with 3 children with CF - they are 12, 9.8, 5.9...I > coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you > ready for this - TOBI after their medication! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 It seems to me that this type of email would be best sent privately. Of course, the moerators may not consider this a religious email. Lori in Florida Longest Day > Today has been such a long taxing day........everyone this morning had that > sad look back in their eyes.... > Yesterday my husband (I made HIM deal with and the Drs.) took my > 12 yr. to CF Center. Her PFT's went down AGAIN........they doubled her cipro > dose and want her back in 2 weeks....She has spent June on Cipro, July on > Zithomax and August on Levaquin. I am concerned because: > 1. She is not responding to antibodics. > 2. She is still coughing to vomiting and bringing up huge > amounts........even though she always brings stuff up...... > > Does any one know what I should do? or even think? I mean to me her > baseline has changed...Do you think its permadent? Damn......please lie to > me............. > > > > Rosemary in New York with 3 children with CF - they are 12, 9.8, 5.9...I > coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you > ready for this - TOBI after their medication! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 OOPS-------- I am so sorry, I really forgot which list I was writing to, I write & receive from 4 different lists. I will be more diligent about that .It just comes out of me that way. I didn't mean to offend anyone. I knew that Rosemary also thinks in that vein & wanted her to feel the caring in a way that meant more to her. sorry, Sincerely, GrandmomBEV Re: Longest Day It seems to me that this type of email would be best sent privately. Of course, the moerators may not consider this a religious email. Lori in Florida Longest Day > Today has been such a long taxing day........everyone this morning had that > sad look back in their eyes.... > Yesterday my husband (I made HIM deal with and the Drs.) took my > 12 yr. to CF Center. Her PFT's went down AGAIN........they doubled her cipro > dose and want her back in 2 weeks....She has spent June on Cipro, July on > Zithomax and August on Levaquin. I am concerned because: > 1. She is not responding to antibodics. > 2. She is still coughing to vomiting and bringing up huge > amounts........even though she always brings stuff up...... > > Does any one know what I should do? or even think? I mean to me her > baseline has changed...Do you think its permadent? Damn......please lie to > me............. > > > > Rosemary in New York with 3 children with CF - they are 12, 9.8, 5.9...I > coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you > ready for this - TOBI after their medication! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 OOPS-------- I am so sorry, I really forgot which list I was writing to, I write & receive from 4 different lists. I will be more diligent about that .It just comes out of me that way. I didn't mean to offend anyone. I knew that Rosemary also thinks in that vein & wanted her to feel the caring in a way that meant more to her. sorry, Sincerely, GrandmomBEV Re: Longest Day It seems to me that this type of email would be best sent privately. Of course, the moerators may not consider this a religious email. Lori in Florida Longest Day > Today has been such a long taxing day........everyone this morning had that > sad look back in their eyes.... > Yesterday my husband (I made HIM deal with and the Drs.) took my > 12 yr. to CF Center. Her PFT's went down AGAIN........they doubled her cipro > dose and want her back in 2 weeks....She has spent June on Cipro, July on > Zithomax and August on Levaquin. I am concerned because: > 1. She is not responding to antibodics. > 2. She is still coughing to vomiting and bringing up huge > amounts........even though she always brings stuff up...... > > Does any one know what I should do? or even think? I mean to me her > baseline has changed...Do you think its permadent? Damn......please lie to > me............. > > > > Rosemary in New York with 3 children with CF - they are 12, 9.8, 5.9...I > coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you > ready for this - TOBI after their medication! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 Rosemary, My oldest has been fighting psuedomonas since last Oct. it will be a year next month. We have been trying different ways to eradicate the psuedomans. Does she have sinus problems like my oldest? Because we are thinking that is were the psuedomonas is hiding and we are having a hard time reaching it because of the polyps. We go in this Wed. to see if the Tobi in the mouth and nose worked this time so keep you fingers cross. Deb A Quote Link to comment Share on other sites More sharing options...
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