lexisangels05
New member
My Lexi was in the hospital this summer and did 5-6 weeks of IV antibiotics. Her cough never completely cleared up like we had hoped, but her next couple of cultures came back clear of the Pseudomonas and Orsa. We thought we were in the clear and the tune up was a success, but now I am wondering if she needs to go back in.
Her cough has continually gotten a little worse over the past few months. She never runs a fever, or shows any signs of cold symptoms. Just a raspy productive cough, she gets a little short of breath when she runs around, breaths kinda hard all of the time, and her voice sounds horse now.
We went in for a check up the week before Thanksgiving and her CF doc said her lungs were clear. Her PFT went from 82%-88%. At that time she was on TOBI, Zithromax 3 x per week, and Septra 2 x per day. Since things were looking a little better they stopped her Septra. I told them about her persistant cough, but since she sounded so good they wanted to give her body a break until her cultures come back.
Her culture came back the worse they have ever been. Mold, 2+ Orsa, and 1+ Pseudomas. They then decided to restart her Septra and keep her on this thru the winter.
Should I be persistant about them rechecking her since things are no better. Cultures kinda scare me cause they are never 100% accurate as to what is going on. Plus she was on all of those antibiotics...what were they covering up? I don't want her to get in trouble and end up with lots of damage.
What do you guys think? Her next check up is not until mid Jan.
Her cough has continually gotten a little worse over the past few months. She never runs a fever, or shows any signs of cold symptoms. Just a raspy productive cough, she gets a little short of breath when she runs around, breaths kinda hard all of the time, and her voice sounds horse now.
We went in for a check up the week before Thanksgiving and her CF doc said her lungs were clear. Her PFT went from 82%-88%. At that time she was on TOBI, Zithromax 3 x per week, and Septra 2 x per day. Since things were looking a little better they stopped her Septra. I told them about her persistant cough, but since she sounded so good they wanted to give her body a break until her cultures come back.
Her culture came back the worse they have ever been. Mold, 2+ Orsa, and 1+ Pseudomas. They then decided to restart her Septra and keep her on this thru the winter.
Should I be persistant about them rechecking her since things are no better. Cultures kinda scare me cause they are never 100% accurate as to what is going on. Plus she was on all of those antibiotics...what were they covering up? I don't want her to get in trouble and end up with lots of damage.
What do you guys think? Her next check up is not until mid Jan.