Noah had a stent placed the day before Halloween. His procedure went well but it left Noah needing to be on IV fluids for 24 hours afterwards which made it so He spent Halloween day in the hospital. He wore his costume to the procedure and then again for the hospital trick or treating. Of course He had chosen the most amazing costume! A Lobster! As much fun as Primary Children’s hospital had made Halloween for these kiddos it still was hard to be away from school and friends. As a parent it just broke your heart because it was just one more think that made Noah’s childhood so different from the average kid. Noah had pushed himself too much to eat and drink enough to go home, He was determined to not miss Halloween with his siblings. By the end of the first street, Noah was being towed around in a wagon from house to house, needing help to limp to the door to trick or treat. It was just pathetic! The poor kid was in so much pain and within two days He was readmitted to the hospital. I think that is the hardest part of Chronic Pancreatitis, watching how quickly it can steal all life out of your kid, at any given moment. One second they are totally fine and then BAM! Flare up and they are in so much pain.
This was not Noah’s first holiday spent at the hospital. During 2023, Noah was admitted over most major holidays. Noah and I spent the Fourth of July in the hospital. Primary Children’s Hospital here in Utah is up on the side of the mountain and fireworks would of been amazing to watch from the outside sitting around on the upper floors. But, come 7pm, Noah’s pain medication finally kicked in and He was comfortable enough to sleep. He was able to eat four bites of Thanksgiving dinner before the pain set in and we found ourselves in the ER. He did somehow make it through Christmas without seeing the walls of the hospital but don’t you worry, He spent most the days after Christmas admitted. Noah missed so many fun things during the stenting years because He was in so much pain. But through it all Noah was brave and took it all in stride. He complained so minimally about the missed festivities.
Kids with Chronic Pancreatitis missed out on normal kid things! It is just a fact! The dang disease just always knows when to ruin the fun. Even before the ERCP’s and stenting Pancreatitis would rob Noah of so many things because the pain was just so bad that celebrating was just not an option. TPIAT is giving us hope that these moments of celebrating do not have to be put on hold or canceled because of a flare up or procedure. I will miss watching this cute lobster walking the halls of the hospital making everyone smile but I will not miss the procedures and Iv fluids for days!