Mylin’s Angry Pancreas

06/04/2026

Today was the first of the days they asked us to add onto our trip. We met with the infectious disease team. I wasn’t sure what this meeting was gonna be about, as we met with the team last time. Last time we were here, they explained that with the over 70% chance likelihood of a splenectomy, especially with the intensity of Mylins, pancreas, deterioration, Mylin would need some extra vaccines. If the spleen were to be taken out, Mylin would be considered highly auto immune, which requires not only extra medication, but extra monitoring, especially during the first year.

When we got into the appointment, we had the same nurse, Tiffany. She is so fun and was ready to surprise Mylin with cute little fidgets. She and the nurse practitioner aware us that our TPIAT nurse/case manager had called them and requested that they get us in as soon as possible so that we could finish the last few vaccines we would need to complete the surgery. We’re hoping that means something really good! 🤞

Originally, they had a thing here for just two extra appointments. Now they have us totally loaded up. We will be getting up early in the morning for an 8 AM appointment with the pain psychologist again. Then we will have an appointment with hepatology and G.I. We will then finish out the day with an appointment with the TPIAT surgeon. 

My had some extra pain today after the endoscopy yesterday. They are also limited on what they can take because the esophagus and stomach need to be treated with extra care for the next three days. They didn’t sleep well last night, but we were able to catch a few hours this morning. Hoping for a more restful night tonight with much less pain.