Category: chest x-ray
We just got some results on Julia’s most recent culture and her chest x-ray. Good news is that she didn’t grow pseudomonas this time! Yea for Julia! That means no TOBI for a while. That is a huge relief. She did test positive for staphylococcus aureus, which she usually does, but this time it was a +4, which I guess is too high for her doctor’s liking. Normally this would be treated with some kind of oral antibiotic, but since Julia has proven to be highly sensitive to oral antibiotics, she was put on an inhaled version of Gentamicin. I guess this antibiotic is normally delivered with an IV, but the pharmacist created a mixture of it that I can just put into Julia’s nebulizer. It takes about ten minutes to administer it and we will be doing it twice a day for seven days along with her usual routine. This is easy money compared to TOBI. I’m just glad it’s not another 28 day run of that.
The chest x-ray is still a mystery to us right now. We got a good film, but her doctor wanted a cardiologist to take a look at it, because something is looking weird in the area where the heart and lungs overlap. I’m still waiting to see what they want us to do next. We are getting an EKG done as soon as we get scheduled and we’ll go from there. I really don’t know what all this means, so it’s the waiting game for now.
Julia is doing well. She is an amazing girl with a strong spirit.
Goddie bags at PCMC
Julia waits for her chest x-ray
Olivia is so happy to get a goodie bag!
Dress-up time
Olivia is always willing to pose for a picture!
Today was a day of re-takes at Primary Children’s. Julia got another throat swab to see if she cultures pseudomonas again. They like to re-test her two weeks after finishing a round of TOBI to see if it grows back or not. If it comes back negative this time, we’ll surely get a break from TOBI for a while. If she comes back positive, we’ll have another round of TOBI and possibly some other oral antibiotic. We also had a re-take of her chest x-ray. This time she was crying, so hopefully they were able to see and time her inhale a bit better and get a picture when she had her lungs full. Julia cried after her throat swab and cried during and after her chest x-ray. She kept saying, “I hate it! I hate it!”
It wasn’t all bad. The girls got some awesome prize bags from the wonderful ladies at the CF clinic. Sometimes they get spoiled on our visits and this time we lucked out. The girls just loved the fun items they found in their bags!
I am going to be a crazy woman tomorrow, getting the final packing done for our big trip. We look forward to five days at Disneyland…the kids can’t wait!
