December 15, 2019

Day 7 of Trikafta

Azer was woken up by severe pain in his upper right abdomen. He had a normal bowel movement, but just in case there was a blockage, he had a cap of Miralax and plenty of liquids. This didn't seem to help, so he took some ibuprofen and put a heating pack on his abdomen. The pain was so bad he wasn't able to finish his Vest treatment. The pain got better but didn't go away completely. He didn't feel well enough to go to his baseball lesson. After lunch, the pain came back as bad as it was before. It seemed to ebb and flow, it would come on sharp and fast, and he'd be doubled over with pain, and couldn't sit still, it was so bad. This time ibuprofen and the heating pad didn't seem to help much at all. I called the on call doctor who said it might be gallbladder, and that he should avoid fatty foods tonight. She also called in a stronger pain medication. Unfortunately, 5 minutes after the medication was ready to be picked up, the pharmacy was closed. I called the doctor back, and by this time Azer said that the pain was so bad, he was starting to sweat. The doctor felt like the best thing was the ER. We always have had the joke that the double doors at the hospital are magic; that as soon as he walks through them, he suddenly feels better. It didn't work this time.

We were taken into a room fairly quickly given the risk of CF patients being in a waiting room with sick people can be life threatening. They put in an IV to take blood samples. Azer got a sonogram and an X-ray. His organs visually looked good. One of his liver enzymes qasy a little elevated, but not high enough to be a concern. All his labs came back normal, except for his potassium, which they had to draw again for. This is when the IV started to not want to work, and they had to do a lot of wiggling around on it to draw blood out of it. They eventually had to poke him again in a different spot.

The X-ray showed he has a blockage in his small intestines. Azer said with the diarrhea he had earlier in the week, he was wondering if his enzymes weren't working as well, and increased them slightly. Trikafta can also cause enzymes to work more effectively, so this might have been another reason for the blockage to have happened. 

They consulted with a surgeon who said it didn't look like a blockage that needed surgery but more like an impaction and felt like it could be remedied by medication. It worked very well, and within a half and hour, he had no pain at all, and was starving. 

He will cut back on enzyme dosage for a few days to gauge how many he needs, which is unusual as he usually has to increase enzymes! This wasn't a great way to spend a Saturday, but he is grateful to be feeling almost 100% and that he didn't miss school due to this. Azer says his lungs are feeling so much better, and that he feels like he can take a deeper breath and he could before. He is coughing frequently and it is productive each time, but the mucus is so thin, it comes out easily. Even though this hasn't been the best week, he still thinks Trikafta has been worth the side effects.

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