C
ClairesMom
Guest
My daughter Claire is 12 years old - diagnosed at birth, MRSA, pseudomonas, stenotrophamonus, Staph, aspergillus. She has quite a rough time with her CF and is hospitalized several times a year even though we are very thorough at home and she works hard to clear her airways and stay healthy. The last 2 years have been pretty tough - in the hospital about 5 times a year for 21 day tune ups. Back on August 7th she was admitted with a pretty bad exacerbation..FEV was about 53%, her best is 64%. She got the usual IV cocktail of 3 antibiotics, increased treatments, cholistin, etc..but instead of getting better, she actually dropped to 45%. Her doc sent us home with some new inhaled antibiotics, bactrim and increased treatments and asked that we come back in 10 days for a f/u. He had no answer for us but said that he can't really keep her there on antibiotics if it's not working so he was trying to change it up. When we went back, she had dropped again..she was at 43% and o2 was 94%. Still, no answer! We just readmitted today and had a bronch to look for any new bugs, but he came out of the procedure shaking his head saying she had an extreme amount of mucus and blocked airways..said it's pretty critical at this point. He hopes it isn't a "mycobacteria", will test the sample for that too. Has anyone had such a strange, acute situation that doesn't clear up with antibiotics? I wonder if all of a sudden she's resistant to Vanco, Ceftazapin and Astreonim? Any ideas or experience? I'm starting to get very worried..thank you