Today we went to E's 2nd Clinic visit. At each visit we meet with her CF Team which is made up of two different nurses, a dietician, Dr. R (the Pediatric Pulmonologist), and a few others who are there to teach us about airway clearance and to go over the research study we are participating in.
Needless to say, these are long visits! But it's great that we have so many people working together to make sure she stays healthy.
For the past week and a half, we have noticed some signs of malabsorption. E has gone from having one dirty diaper a day to having 7 or 8 of them. We answered several questions to see if we could figure out the root of the problem:
Were the enzymes expired? No.
Had they been left in the heat? No.
Are we using generic enzymes? No.
Since it wasn't any of those, they decided to put her on an antacid to see if that helps. Apparently the pancreas not only produces enzymes to help digest food, but it also produces bicarbonate which is a base that helps neutralize acid that travels from the stomach to the small intestine. If her body is not producing enough bicarbonate, the stomach acid can break up the enzymes before they get to where they need to go. So now she is taking Axid twice a day to see if that's what the problem is.
Even with all of that going on, she is still gaining weight. She weighed 11 lbs today! The dietician said she wants E to be gaining 23 grams/day and right now she's gaining an average of 15 grams/day so if we increase her calorie intake a little more she should be right where she is supposed to be.
The major thing we learned about today was chest physiotherapy, or CPT. CPT is a method used to loosen the thick, sticky mucus in her lungs so it will be easier to cough out. We learned how to use this little rubber mallet to do "percussion" on her chest, back and sides. Basically we use our baby as a little drum for about 30 minutes twice a day!
So far she doesn't mind it but I'm sure we'll have our work cut out for us when she starts moving around more!