PIDD visit

Bright and early 7;30ish we left the house for our PIDD visit that we have been anxiously awaiting for 3 weeks. It was yet another L-O-N-G appointment, (2 1/2 hours to be exact) filled with lots of questions and discussions. After lots of gathered information, looking at all her medical notes, list of medicine and surgeries, they (the PIDD) came up a game plan: put her on Levfloxacin-an oral medicine that is NOT FDA approve---BIG RED FLAG right there. This is a medicine that has tons of side affects and can hurt her growth development, like Hayley needs to be hurt anymore in this area! *she did weigh in at 40 pounds and 44 1/4 inches today*
Both Brian and I are very hesitant about putting her on this drug and have decided against it. We know that with any type of medicine you take are risks of side affects and it not "working or curing" your illness. We just couldn't justify doing this to Hayley (or us) when apparently its not FDA approved for a reason!
They could do a PIC with Vancomycin (again has HUGE side affects) but she would be in the hospital for 21 days with this since she has had a PIC line that ended up with Staff. Again, there is no guarantee that this would work at all. We don't want to do this unless its the last resort, absolutely necessary and will be a guarantee fix.
As you know, Hayley has been on antibiotics/steroids most of her life and way more then any "normal" child her age, as a precaution to check immunity levels, and resistance to antibiotics, more blood work was ordered and we should know the results of this on Monday.
Right now we have opted to wait for her to have a "flair up" and take her into the PIDD (they promise we can get right in this time, no 3 week wait) when she has one so that they can see exactly how she acts, feels, etc. Praying that we are not due one for a while, since the tubes seems to be working--THANK GOD...3rd TIMES A CHARM--KNOCK ON WOOD!
Thanks for all the prayers and concern..keep em coming!