Mylin’s Angry Pancreas

4/28/2026

TPIAT DAY 1 (typed version a few days late)

Pain Management & Physical Therapy

We started out going over Mylin’s pain history. How pain shows up, how often, how long it stays, treatments we use and what their effectiveness is now and in the past. We also went over the entire story of Mylin’s illness from the very beginning: when it started, hospitalizations, specialists we have seen, procedures we have done, therapists we have seen, hospitals and doctors we have seen, diagnosis that were suspected or given over time falsely or otherwise, literally the whole picture. They talked about what that could look like if we follow through with the surgery. Driving home that of course you don’t come straight out of surgery pain free and this is by no stretch of the imagination a pain-free surgery. However, it is a hope a pancreas pain-free life. They let us know that we would need to get appointments set up with pain management at our home town hospital so that if My has the surgery, they will be able to work in conjunction with Nationwide to continue pain care without a lapse in treatment. Especially since nationwide is more than 2/3 the way across the country from us. (We already have the referral for this from our last hospital stay, but they are booked out till June.)

After that we had an appointment with Physical Therapy. They asked lots of questions to figure out where Mylin is currently with strength, as well as had My take part in some really small endurance tests. Our main takeaway there is that they would really like to see Mylin get stronger before they do the surgery. They say that the stronger kids are the better/quicker they recover. We also need to ensure with adding in the new exercise routine, we add in calories (probably the most challenging of all) because they really don’t want to see Mylin lose anymore weight at all. The pain and nausea caused by pancreatitis has cause Mylin to lose 15lbs mid last year and they now weigh the same as they did at 10 years old. They also let us know what physical activity/therapy would look like during recovery in the hospital and at home after the surgery.