Friday, June 8, 2012
Stupid, unpredictable CF. We just got back the culture results from our clinic visit on Monday and it grew Pseudomonas again. I'm waiting for the nurse to call me back with a treatment plan. In the past, we have been able to eradicate it with a PICC line and IV antibiotics. But now that Drew is a little bigger I'm slightly more inclined to try the inhaled antibiotics that are normally used to treat pseudomonas infections. The problem is that he has had such a bad reaction to some of the inhaled drugs in the past. He's bigger now and his airways are stronger so I kind of want to try it. But if we try that for 30 days and the pseudomonas isn't gone and we need a PICC line then that cuts into our summer trip to PA and ruins things for everyone. So part of me wants to start with the PICC that we've had success with in the past, but I know that that could be far less pleasant for Drew even if it means a shorter treatment time. This is one of the things I hate about CF, its ability to ruin a good day with the snap of a finger, and to turn the world upside down for our family. I'm still waiting to hear back with what the doctor thinks is best. She usually goes with what I say I want, but I don't know what I want. I don't know what I think is best. It would be great if we can do the inhaled stuff and he tolerates it fine and the pseudomonas goes away. Bit if we do a 30 day treatment of that, we are scheduled to be in PA when it finishes, so how can we even get him re-cultured to see if its gone? And if it isn't gone, I can't get a PICC in PA and have homecare deliver meds to my parents house. Ughh. Bad end to a good week. Stupid CF.