the infection

We got a call about a week and half ago from Reagan's CF nurse. Reagan's throat culture came back positive for Pseudomonas. She said we would immediately put her on some hardcore antibiotics, and it would probably get rid of it. She also said that when Reagan gets it a second time in the future, antibiotics should work again. However, generally when she gets it a third time the antibiotics no longer work and she will have to go on medicine for the rest of her life to manage it. So I asked, how did she get it? How do I prevent her from getting it again? Well apparently she can get it from just about anywhere because it is in the environment. Yay. Just what I wanted to hear. I hate it when I can't control her disease, when things are out of my hands. So, back to the story. We started her on two antibiotics, one oral and one inhaled. Adding 40-50 minutes to her already hour of breathing treatments daily. Fun. Now she doesn't even want to watch any shows anymore. Plus the oral one came with tons of restrictions, like no dairy or things with calcium for 2 hours before and after taking it. Yeah, that makes mealtimes very hard, especially when she needs tons of calories. But that wasn't all. Then she started having diarrhea, then she stopped sleeping, then she started freaking out. I mean FREAKING OUT! She is generally a calm child, but she would get hysterical for no reason and could not be calmed down. And this happened approximately every 20-30 minutes. So I called the doctor and she said to stop the oral antibiotic immediately. Within about 12 hours she was doing much better. However, Pseudomonas has to be taken care of right away, because after about 6 months it can develop a biofilm making it virtually impossible to get rid of. So the next day the CF nurse called me back and said we had only one other antibiotic we could try, and if she has a reaction to it or it doesn't work then she will have to be hospitalized. So Rick gave her a blessing, I fasted and we started the new antibiotic on wednesday. She seems to be tolerating it better, but she is walking the line. She is still having mood swings, but not nearly as severe. And she cannot fall asleep! Last night I laid her down at 7:45 and she was not asleep till 9:45. She is averaging about 8-9 hours of sleep a night, which is not enough for a 3 year old. She has dark circles under her eyes, but she just can't sleep. I did finally get her to sleep for a nap today, after about 1.5 hours and then she only stayed asleep for 40 minutes. I feel so bad for her. She is such a good girl about it, but it is definitely hard on her. Only 23 more days... Hopefully.