Confession: Please let what I am about to say go completely off the record!
I'm not usually a pouter when it comes to CF. But today I'm feeling quite trivial. I'm sure other CF mamas can feel my pain. When you've poured so much blood and sweat into getting your child to gain weight or pounded the heck out of their lungs to get rid of a nasty cough and to no avail you fail. CF is in control and not me. Well, at least that's what I feel like today.
Just shy of literally inhaling a stick of butter for the past week with every feed, Cooper still isn't gaining quite the weight he should be. His tummy is enlarged (=malabsorption). Oddly enough our Cayden, who usually is a rockstar at packing on the pounds, is also at a plateau. The pulmonary team's course of action will be to increase Cooper's enzymes yet again (although he is already on a high, high dose for his fat intake) and increase the dose of omemprozale (for suppressing acid). Cooper is transitioning to more bottle feeds so the dietitian suggested we add more formula/fortified breast milk to his diet. If things continue the way they have been, we may go down the "switch enzyme brand" route. We also talked with the doctor about Cooper's quick switch back to coughing shortly after he finishes a course of antibiotics. Dr. Green thought it would be worthwhile to keep him on antibiotics chronically through winter in an effort to keep his immune system working over time to combat any viral or bacterial infections that he might be introduced to.
Cayden has graduated to ENSURE-a whopping 350 calories per can! Caydens BMI (Body Mass Index-weight to height) is looking super aside from of his lack of weight gain. Cayden was sick this past week and since starting bactrium (which has an anti-inflammatory component) we have seen an immediate turn around in his cough. So lung-wise we are really happy with is progress! He even PR'd in his PFTs today!
So while it definitely was not the news I was hoping for today, I'll take it. Because it could always be worse.
I've been too busy to update with pics lately. But here's the family picture I picked for our Christmas cards! Enjoy your weekend.