Wednesday, July 30, 2008

Zoe cultured Pseudomonas for the first time

The dreaded call came yesterday...Zoe has cultured PA for the first time. I got off the phone and cried. Then I got pissed...pissed at cf.

I guess what really gets you is...your floating along thinking, wow, it has been 7 months since she has been in the hospital, we are doing good! Then SLAP!! right in the face.

Yeah, sure she has been on orals several times since then, Bactrim a few times, Keflex, but I thought over all, we were doing good.

I guess another thing is, you do everything that is preventative, I mean EVERYTHING, we never miss treatments, never. But the nature of the disease still shines through and puts you back into your place. Ugghhh.

So, we picked up her Cipro (an oral antibiotic) and Tobi (an inhaled nebulized antibiotic~it takes 30 minutes to nebulize) today...will start tonight. Zoe asked me, "Is that (speaking of the Tobi~it smells and tastes bad) the treatment that I don't like??". To which I responded, "Yes, baby, it is, I'm sorry." She sais, "Ohhhhh, I don't like that medicine...."

Onward we march..........


  1. Hi, just found your blog through the CF forums. My sone was diagnosed just shy of his 1st birthday too. He turned 2 in March. He just had his first PA culture in Feb. We were floored. We enrolled him in the EPIC study. Not sure if you have it in your area, but thought I would mention it. Sorry about your daughter's culture. Wishing you and her well during this time of new adjustments. Kick it's tushy, Zoe!!

  2. we are praying for you guys! we hope zoe gets better!