CF Update

Testing blood oxygen levels

We had a CF clinic visit early in September. They recently instigated the annual visit, a more thorough visit that provides education opportunities for families in addition to the regular check up. During our annual visit (we still will go to clinic every three months for regular check ups) we were provided an hour long session with a respiratory therapist to review how to use the PEP and to do huff coughing technique. We also were given extra information on nutrition, and walked through Toe's FEV 1 test (a breathing test that measures lung capacity) to explain what it meant.

The upshot is that all is going well. Toe's blood oxygen levels are great. His lungs are functioning well. Since Toe started an antihistamine as an appetite stimulant, his BMI has shot from the 39th percentile for his age group to the 68th percentile. They want his height/weight ratio to be above the 50th percentile for his age group because studies have shown that is the magic number for healthier lungs.... Toe has a tendency to grow up and then fill out, and each time he grows up, his BMI drops considerably and they become a little concerned. Right now to help keep Toe's weight up, he drinks half and half (as the main liquid in his diet), he eats high calorie, high fat foods, and he takes soluble fat powder. The appetite stimulant has helped him most of all.

We have been very fortunate with Toe's lungs this year. We work hard (through breathing treatments, germ avoidance, etc.) to keep the mucus moving through his system. Last winter Toe caught pseudomonas aruginosa in his lungs and had to undergo a full month of inhaled antibiotics. The bad bacteria was eradicated (temporarily) and Toe has had few exacerbations since then. We have been very, very lucky. We enter into the flu season with fingers crossed and hand sanitizer everywhere.