CF Update

Toe had a quarterly CF check up this week.  He was relatively healthy over the summer although it took him a long time to recover his energy after his last major illness and hospital stay. He has been sick a couple of times, but has managed to recover without getting an exacerbation (Hallelujah!).

It was the kind of visit we like to have: his height and weight growth were good, and his lung function test showed that his lungs are doing well. He is in the 80th percentile for his age for his BMI (they want him to be over 50th percentile). His PFTs came in around 110% (fantastic for him). The doctor and nutritionist were happy with what they saw.

They had a clinic downstairs for patients' families to get flu shots, so J got his (Toe and I had ours earlier).

They now take the sputum culture (throat culture) at the beginning of the visit and then offered Toe a snack. Forget stickers. In CF clinic, where calories are always an issue, you get chips, crackers, or a cookie as a prize. The nurse asked whether Toe wanted something salty or more dessert-y. Toe opted for salty and was given a choice of chips.

Eating Puffs in clinic like a champ

Because we see an entire team: nurse, pulmonologist, nutritionist, pharmacist, and social worker, visits can be long - we're usually there about three hours. We'll go again in December for Toe's next clinic visit. In the meantime, we're trying to keep him healthy and in school as much as we can.