Need advice from more experienced parents

Hi All, My daughter has been doing really well up until a couple of months ago. Her PFTs started dropping. She just finished a course of Augmentin as she was culturing an abundance of staph. PFTs stayed the same. Had a CT scan which shows loss of elasticity and some scarring in the lower lobes. Is going in next week for a PICC and IV antibiotics and intense chest therapy. She is in the Orkambi trial and, thankfully, I believe it has helped her maintain a healthy weight. She was in hospital two years ago at this time and she looked very sick. Today she is pink, active, has a healthy BMI, o2 at 98%. My fear is that she is losing her lung capacity rapidly and she is only 8. Doctor says some of this may be reversible with the IV and PT. So my question to those of you that have dealt with this in the past is what can we try at home to make sure she doesn't lose any more lung capacity? We already do the vest for 30 mins daily but I don't think that really reaches the lower lobes that well. She also sees her PT once a week. She plays hockey but she is on a beginner team so she isn't skating that much. She also does gymnastics about one hour a week. I am thinking we need to increase the physical activity. Are some activities better than others? Any suggestions are really appreciated. She is my only child and I am so scared of losing her too soon.
Source: Cystic Fibrosis Families Forum - Category: Respiratory Medicine Authors: Tags: Families Source Type: forums