October 10, 2013
Weight 10.23 lbs
Height 20.75 inches
Creon: 7 pills a day
Sweat Test
Final test to determine Cystic Fibrosis. Evan produced more sweat than any patient ever. Results: positive.
Fecal Test
Indicated that not yet pancreatic insufficient but on the lower range. Dr Asfour anticipates Evan will be pancreatic insufficient by next visit.
Met with
Sue Mills - CF Nurse Coordinator
- Gave us a bag with CF resources including binders, books, therapy onesie support group information, etc
- Evan's mutation is Pancreatic insufficient
- Showed us how to administer Creon on a spoon with applesauce and salt
- Discussed support groups and future appointments
- Most important thing we can do to extend Evan's life is his therapy!
Dr Asfour - Pediatric Pulmonologist
- Gave us an overview of Cystic Fibrosis and what we can expect
- Delta F508 is the most common mutation in Caucasians
- Severity varies case by case.
- Median age in the 80s was 5 years old. Now it is 37 years old.
- Discussed latest advances within the field of study
- Kalydeco essentially reverses the effects in 3% of CF population
- VX809 is an upcoming drug (similar to the effects of Kalydeco) for Evan's mutation that he could qualify for when he is two. Pending FDA approval and further tests at this point.
Explained CF like a battery. We all start out with 100%. Whenever "normal" people get sick, their batteries go down for a bit, but then recharge again. However, when people with CF get sick, their batteries never recharge. If antibiotics have to be given when sick, eventually their bodies get to the point that they can no longer fight off the sickness.
- Decided it best to keep Evan home from church and Jaxson home from nursery until the cold and flu season is over
- We learned we do not qualify for anything....surprise!
- Continue with nursing unless Evan begins losing too much weight down the road.
- We decided to learn how to perform CPT (Chest physical therapy) to jump start Evan's therapy. They usually wait until second visit to train parents.
- Two puffs of albuterol given morning and night followed 'tapping' on 8 spots on Evan's body for 3-5 minutes a spot.
- Sent us home with blue tappers, albuterol, and mask. The mask is to be soaked every night for 15 minutes in soapy water then air dried.
Interesting Tidbits
- On the way home we stopped by a Wendy's to eat. This was our first attempt at administering the Creon on our own before Evan nursed. We totally freaked out an elderly lady in the booth next to us. How dare we try to feed solids to a newborn! She got up, walked over and said "Well that's interesting!"
- Jaxson was also sweat tested. We called it the Spiderman Test to try to take away some of the scariness of it. He does not have CF, but may still be a carrier. We will test him later.
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