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.

We came home from the hospital on Feb 23, we were in the hospital a total of 21 days. Ruby was most excited about getting her PICC out, until she realized that the tape would have to come off to get the PICC out. Luckily the nurse let Ruby take the tape off this time. She was SO SLOW, but he was very patient and let her take her time. She did a great job! The last day was a little frustrating. A lot of confusion concerning her medications, 3 hours of waiting due the mix ups. I finally just said I'm leaving, we were still missing two of her medications and didn't have the right amount of another one. I knew I could get a dr to call them into a pharmacy for me. They weren't too happy about me just leaving, but I had home health meeting me to teach me how to use the home equipment and finally left around 2:00 pm. It took me three wagon trips to get all our stuff out. It was so nice to leave!

So we have been home almost two weeks and things are going well. As I have mentioned Ruby is not in love with her treatments. The morning treatment takes about 1-1.5 hours and the night treatment takes about an hour. Sometimes it's a battle the entire time, other times she will just make comments like "I really wish I didn't have to do the shaky treatment." ME TOO!

I can't believe how much better she is doing though. We went for a follow up visit at her pediatrician's and she had put on 6 lbs since her last visit. When she only weighed 30 something lbs, that is impressive weight gain. She is finally putting on some weight. I sent her daddy a picture the other day by text and he had to ask if it was Ruby, he couldn't believe how much she had changed since he left. Every night she comes in my room after I've put her to bed and asks, "Can I have some nachos?" That might be contributing to her weight gain, but it is perfect for her high calorie, high fat, high salt diet. She used to cough to the point of throwing up almost every morning and evening. Now I hear her cough during her treatment sometimes. AMAZING!

She is happy to be back at school and playing with friends. Really I just want to keep her home in a little bubble so that we don't have to go back to the hospital, but obviously that isn't very realistic. We went back to church last week and she was not in love with staying the whole time. I've been taking her home when we separate for classes since before Christmas because her cough had been so bad and she'd been so sick. So when she had to go to her class she was not happy, she asked if I would take her home and when I said no, she said "how bout Annie?" She keeps joining me in my class. I'm not used to having a mama's girl. She's never been like that before.

Thanks again to everyone for their help and prayers. We have truly felt blessed through this whole experience.