Mylin’s Angry Pancreas

06/01/2026

Today we had two appointments at Nationwide Children’s Hospital. Both of these appointments served as follow ups for the previous week on consultation. From what we’ve heard mainly the doctors need to ensure that the pain is for sure only coming from the pancreas due to the fact that Mylin’s labs and bloodwork have never been able to show that.

Our first appointment today was with the children’s pain psychologist/therapist for what the hospital calls Pre-hab. The therapist gave Mylin some tools that My could use while they’re in pain to help distract so that it doesn’t become too much. These are things such as breathing techniques, fidgets, imagery, and using your sense of smell to pull your mind away from focusing on the pain. There’s also some other therapeutic things they went through. She had hoped to have more meetings with Mylin, however, California law states that only California therapist can meet with patients from the state. This is true for even over the phone visits . Therefore, Mylin can only meet with her when we are in Ohio. She did say she could meet with a California therapist and go over information to have them continue the pre-hab at home.  the therapist also went over some of what Mylin can expect from surgery if they get to go ahead. She walked Mylin through how to deal with it as the date were approaching, as well as some ideas of what it would look like and tools they could use while they were recovering. She went into detail about how “with-it” Mylin would and wouldn’t be throughout the certain weeks of recovery, and what that would look like according to what tools they could use when.

Our next appointment was with the motility team. She asked us to start with Mylin’s health history from the beginning and give as much info through now. She went over hospital stays and visits. We shared all the information we were given along the way. She also went over every medication we have tried and are still trying and to whether they worked or what their results were. She gave some suggestions for new medications for the extreme nausea, so Mylin will have a couple of new prescriptions to try.  at the end, she did say that her findings would be that the pain is coming from the pancreas. She said that there is no evidence she sees that it could be anything else related to G.I. that would cause Mylin’s specific condition. This was pretty reassuring to us since that is what the doctor said they are looking for.  She said she would forward her findings to the TPIAT team. 

Mylin and I are both pretty exhausted and ready for an early bedtime tonight. Especially since we also had to squeeze in time to take me to the urgent care for an allergic reaction. A big shot later and lots of meds for me, My and I are now both looking pretty sluggish today.

Thanks for following along as we continue this wild ride.