We got the results of Jackson's latest study for the pulmonologist. He wanted to have a better idea what he was doing with the pancreatic enzymes. What we know now is that the enzymes won't be going away anytime soon. Jackson fecal elastase was a 108. For reference, anything above a 200 is considered normal, anything from 100 - 200 is considered moderate pancreatic insufficiency and anything below 100 is considered severe pancreatic insufficiency. So Jackson now has moderate pancreatic insufficiency which means that his pancreas is not functioning enough to produce the enzymes needed to digest and use the food he eats...hence the enzymes. Not the news I was hoping for! The pulmonologist also looked over the immunology labs and said that he would keep watching as there could be something else there to look into. He didn't feel the labs were related to "maybe CF," that it wasn't normally seen. Although the nurse chuckled and said that they know Jackson doesn't follow the "normal" protocol.
What cracks me up, or in all actuality frustrates me to no end, is that every doctor keeps passing the buck if you will. GI says "let's wait and see what Pulmonology says." Immunologist says "it's related to his CF." Pulmonology says "let's keep watching and waiting." ENT changes treatment, reaches out to everyone and here we are. So we repeat the sweat test in the fall. We repeat the immunology labs in the fall. We keep doing the nebulizer (which Jackson has started kind of doing on his own...we have to be there, but he is now holding the meds thing and turning it on and off). Jackson is also getting better at recognizing what he is feeling and telling us what it is (like yesterday, tummy/chest hurt but he said it felt like he was backed up).
So there we are. Addie has her procedures in a few weeks and then a follow up with the pulmonologist later that week. Will that tell us anything? I don't know. Only time will tell.
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