---

I thought I’d take this post to share a bit on the CF part of our lives for just a bit.  Oh no, here she goes again!  There have been a few changes in Julia’s regiment that I’d like to share.  Julia is absolutely fantastic!  At her last CF clinic appointment, her doctor felt we should add a few things to her care to keep her on the right track.  One thing that was added was what was referred to as “cronic” Azithromycin.  Julia has taken Azithromycin before, but just for a five day run when she has a little cough.  This time, she will be taking it on Monday, Wednesday, and Friday, indefinitely.  This is no big deal because I just add another pill to the bunch that she swallows in the morning.  We made this change because Julia has been doing this throat clearing and” lugy hawking” thing, for lack of a better term, which made her doctor think she may have more mucus present in her lungs.  This drug is also nice because it reduces inflammation in the lungs which is what causes the permanent damage, so we feel this is added benefit.  The nice thing is that this antibiotic has not caused Julia to develop c. diff., so all is well with her little tummy.

Another addition is adding Hypertonic Saline to her morning treatment.  This is something Julia inhales in the evening already, so we just slip it into her morning treatment as well.  This is to help her clear out any excess mucus that may be building up in her little lungs.  So, this month, Julia inhales five nebulizers of medicine.  It makes for a lot of sanitizing at the end of the day for me, but I do believe that her lungs are saying, “Yay!”

One last change that should be coming very soon is Cayston.  Cayston is a new inhaled antibiotic that is used to treat pseudomonas.  Cayston would replace Julia’s TOBI.  TOBI adds about an hour per day to her breathing treatments.  Cayston would do the same thing as TOBI, but in less time.  Cayston takes about three minutes to inhale, where as TOBI takes about 30 minutes.  This would be huge for Julia.  The only down side to Cayston is that it has to be done three times per day instead of two.  That means we would have to figure out how get in a ‘noonish treatment.  I would also have more clean-up due to the extra equipment for the extra treatment.  If all goes well with her practice run of Cayston up at Primary Children’s, Julia will switch from TOBI to Cayston and be the youngest patient at the Intermountain CF center to be on this drug.  I’ll keep you posted on how it goes, but we are excited about trying something new.

That about covers the new developments in our CF world…Julia’s CF world.  We are so fortunate that we have so many wonderful things to treat Julia’s cystic fibrosis.  We are also very optimistic about new developments that are approaching what looks like may be a possible drug that targets the root cause of cystic fibrosis and not just the nasty symptoms.  That would be truly wonderful.  After all, what I really want for Christmas is a cure.