Mylin’s Angry Pancreas

05/27/2026

This morning was our fourth and final session of our third round IB STIM.

It’s wild, because I can think back to our first round in February 2025. When we were finished, the hospital staff asked us if we were gonna celebrate and go to Disneyland or something (it’s in the same area). To which Mylin quickly replied, “We’re too broke for that!” lol. It did feel like something to be celebrated and we got fancy coffee and were happy hopeful about the pain going away forever. This of course was before we knew the chronic pancreatitis diagnosis, and before the pancreas had atrophied so much that half of it was dead. 

This time we’re just hoping for Mylin to get a break from the pain. If it’s like it’s been in the past in about a week or so they’ll start feeling a little bit of the effects. Enough to just take the edge off.

Mylin continues to be in a lot of pain and super nauseous since Friday night. They’ve also been overly exhausted, sleeping most of the day away, and even having a hard time, not nodding off at school. We’re managing at home, by mimicking what they would do if Mylin was hospitalized. We’re doing tons and tons of electrolytes and fluids, cycling more intense pain medication and ibuprofen. The intense medication is from surgery Mylin had just a few months ago, so we only have a few days worth, but we want to help them get through the week without actually being in the hospital. In the hospital they’d be getting these three things intravenously. It’s helped keep them a bit more comfortable. We have an appointment with the pain clinic here in San Diego next month. From what the dr said, they’ll prescribe us narcotics so that we will be able to do the mimicking of hospitalization at home when things get really bad. That way we don’t have to be hospitalized unless it’s something that we can’t handle doing just that. Of course, no one wants their kid to have to rely on those, so that’s only for when it gets really horrific. it’s also part of why we want this surgery so bad. We don’t want Mylin to have to rely on narcotics to feel comfortable. Ohio also wanted us to be set up with the pain clinic here in case we are able to go through with the surgery. If that happens Ohio and SD will have to work together to ensure that Mylin’s recovery and all the medication’s are covered prescription wise seamlessly between Ohio and California. Since some of those prescriptions and treatments things won’t legally transfer over state to state.

Mylin didn’t want to be hospitalized this go around, because they have finals this week again. Finals would have been next week, but because we fly to Ohio on Sunday, Mylin gets to do them a week in advance.  The bummer is Mylin will have to miss one of their little sister’s eighth grade graduations. Which for us is not only a time to celebrate sister, but also to be together as a family. My in-laws are in town and it would’ve been nice to just have us all together for the graduation and celebratory meal, but one more thing this sickness takes.

We’re looking forward to having this next set of Ohio appointments this coming week, and are holding hope it will give the TPIAT team what they’re looking for to give us our yes.