I've been telling myself I need to write a blog on what we have been up to the past month.
I'll make it short by saying school and soccer. You know, the usual.
Throw in a snow day and winter break and that pretty much covers it.
What I didn't expect to be posting about is the P word.
The dreaded P word.
Despite Bryce having a good clinic visit 2 weeks ago: PFT numbers were up, sinuses look good, weight and height were solid giving us a BMI of 66%, I got a call today from his CF team's nurse practitioner and unfortunately she called with disappointing news. Bryce cultured pseudomonas (PA). The results came later than they normally would with good reason, but the story is a little long so I'll spare you the details. For those of you reading this that don't know what PA is, it is a "super bug" if you will, for CFers. Click HERE to read a short description instead of me trying to explain it.
Bryce has only cultured PA one other time and that was when he was 15-months-old. Needless to say I was pretty bummed by the news today, especially since our clinic visit was so positive. I had a slight freak out after the call, but have since pulled myself together and am ready to take this beast on. The plan of attack is the same as last time: a 28 day cycle of TOBI, which is an inhaled antibiotic done twice daily. He has to do the TOBI after his vest treatments (AM and PM) so the vest and TOBI can't be done together, which means added treatment time in addition to sterilizing the neb cups after each use. Not a huge deal at all, but just more added to our busy schedule.
When Bryce cultured this back in 2010 we were able to get rid of the PA with one cycle of TOBI and I am hopeful the same will be true this time around. We are currently waiting for the medication approval with insurance. TOBI isn't cheap to say the least, but then again what CF drug is?!
I'm hoping we can start by Friday at the latest.
Please keep Bryce in your prayers over the next month. Pray that the medicine gets into his lungs, kills this nasty bacteria and a month from now we receive news of a clear culture.
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