Sayonara Pseudomonas... SWEET!

We had our first visit to the Cystic Fibrosis Clinic at Primary Children's last week. It went really well. Ruby is growing so fast! It's truly unbelievable. I can't believe she is the same kid. She weighed 33 lbs when she got admitted to the hospital and weighed 40 lbs at her visit this week. She is in the 73% for her BMI, they want her between 50-75%, so pretty much perfect. She has no cough, and for those that know her, again unbelievable. I don't remember a time since she was born that she has coughed. She feels so much better, has SOOOO much energy. She still is not in love with her new life, she doesn't like doing the vest treatment or the countless nebulizers, and she especially doesn't like flonase spray up her little nose, but she does it everyday. She does think I'm the meanest mom and really wants her dad. (Little does she know, I'm the nice patient one -Love you Honey!) For the most part, things are going so smoothly, I feel so blessed to have caught this when we did and for having such great Dr.s.

She had her sputum cultured and had been growing pseudomonas in the hospital, (NASTY bacteria, common in CF patients) this meant possibly a lifetime of inhaled antibiotic nebulizers (TOBI), every other month. It adds an extra 60-80 minutes of nebulizers a day when she is on it. We were on it last month and are currently off for a month (SO NICE!). So, her culture from our clinic visit came back negative this time, she will be cultured again next month at her clinic visit and will for sure do one more round of TOBI in May, but they are optimistic that they got rid of the bacteria. So we are praying for clear cultures.