Once Noah received his diagnosis our life began to quickly change. It seemed like his body knew we had an answer and decided it was time to give up. In a matter of just a few short months, Noah became a celebrity on the 3rd floor of the children’s hospital in our area. He was being admitted for at least an  overnight stay  every ten days. The treatment for a pancreatitis flare up seems so simple, pain management and iv fluids. It maybe a simple treatment but without it the flare can quickly get out of control and cause so much pain that these kiddos can do nothing but throw up and lay in a curled up ball. We could almost predict when Noah would get a flare up, we could see the pain start to hit  his eyes and then with in a day we would be in the hospital. He would always have to weigh the options when it came to certain activities, He knew that running around or jumping would cause a flare up, being a normal kid was something his body could just not handle. I got to the point where I just had a bag packed for the hospital at all times, knowing it would be used. Can you imagine living this way? Knowing that basically weekly you would be uprooted from your home to be poked and prodded in a hospital bed? It would be just depressing and really start to wear down on your outlook of life. Then, as a parent trying to balance everything at home, the hospital and your own emotions/exhaustion. We are so blessed to have a large supportive family who was always willing to help babysit the other kids and try to make life as normal as possible for them. But I am sure they to were exhausted by the frequent phone calls “ I need help”. This pattern of going to the hospital constantly went off for about two years before we decided that stenting was not going to work and we need to do explore the TPIAT option. 

When I say Noah was a star of the hospital, I am sure you can just see his cute giant brown eyes charming all the nurses. He is so witty and sweet that He was constantly telling the nurses they were not old or that they were very good at their jobs. His eyelashes I swear are world famous, and completely wasted on a boy.  He was also famous for his Jekyll and Hyde routine. Whenever Noah was coming out of anesthesia you better watch yourself. He would turn into a complete monster and could not be reasoned with. He would hit, bite, pinch like his life depended on it. He would need to be tied to the bed for his own safety and at own point was placed in a cage like net so He would not fall out of bed. It was really impressive.  But, always within an hour or so He would become his sweet self again. I will always be so grateful for all the ER and floor nurses that were so invested in Noah’s health. I had nurses in tears when they heard we were going for the surgery and that Noah was going to get  the much deserved help that he needed to heal and overcome this life sucking disease. 

Stenting the main duct of the pancreas would offer some relief to Noah but it would not last for more then three weeks at a time. His Doctor was amazing and patient with us when we would need urgent stent replacements over and over. With each bigger size of stent placed we would see more relief for Noah, then we would hit the three week mark and that dang pancreas would kick out the stent again! Stenting was always a risk, things could go perfectly smooth and we would only have to stay in the hospital overnight, or they could cause a flare up and we would be there for a week.  The unknown was always the worst part of pancreatitis, you could never predict how the pancreas would behave, or for how long it would stay angry. Forget making any plans or decisions about the future because they would always be ruined or changed by a flare up.

Noah’s favorite ER Nurse is a man named Boston, He rocks a mohawk and has the biggest heart. Even when we had a different nurse if Boston was on shift he would come  see Noah. We saw Boston so much in the emergency room that He could tell how bad Noah’s flare ups were just by looking at him. Boston was part of our village, I know without a doubt He advocated for Noah multiple times to get the right labs drawn, and the right care. There were many times Noah would get so frustrated with the nurses and Doctors for not understanding chronic pancreatitis that he would say “ Just get Boston ” and when Boston would come into the room  a sigh of relief followed by ” Good, finally someone that knows what they are doing”.  Think about this for a second, yes it is cute and fun that Noah had this awesome nurse he loved in the ER, and how great and smart that Noah knew when He was not getting the right care. But how insanely depressing that my sweet Noah had been to the ER  to be able to cultivate a friendship, and to know when His doctors were not understanding what was wrong with him. It just breaks your heart thinking about how much time this cutie had to spend there. 

Pancreatitis has been referred to as a mystery disease, even with the diagnosis it was always still a mystery. When would a flare up hit, how long would it last, would the doctor know how to treat it, was the stent still in place, would the stenting cause a flare up? Even with a diagnosis the amount of unknown and frustration always seemed to amaze me. 

Noah and his famous eyelashes always handled everything like a champ. He is truly the bravest kid around. Yes, there were days he would be defeated but He always found the positive in things and kept everyone laughing.  He is just the coolest kid I know.