Mylin’s Angry Pancreas

Here’s why:

Our Dr a few months ago: I can’t prescribe pain medications. They might be helpful to have some on hand to avoid some hospital stays when pain is “hospital level” (as our family calls it) I’ll refer you to the pain clinic

Pain Clinic: We don’t have openings for 1-2 months

Ohio Team: It would be a good idea to have a pain team on deck in San Diego who can bridge the gap in case Mylin goes home on medication that can’t be prescribed by an out of state doctor

Two months later pain clinic: We don’t prescribe medication we only come at the pain from a psychological standpoint point. We don’t think anyone at this Children’s hospital prescribes pain medication.

I felt so upset, angry, frustrated and let down. I sobbed and then held it back the best I could because I knew this meant now one of my pre surgery boxes is unchecked and I now have a huge thing that I not only have on my plate, but I have to research who TF it is that can actually help. Because there is no way at a hospital that does intense surgeries on children that there is no one that will give a child a pain medication prescription. Especially given no one else in the county can see minors (with the expectation of a general pediatrician) besides the Children’s hospital! Gahhhhhh

Every time this happens it means more on my plate and longer My goes without the care we were actually seeking. It means me calling all over God’s green earth to attempt to find the place we should actually be sent, find out how to get on their schedule, and seek out another referral. It usually also includes an internet deep dive to really figure out myself where we should have been sent, because there have been several times we have been sent the to just another wrong place or everyone is just has no idea where to send us.

This was an appointment that was on my to-do list to make the trip to Ohio. It had also been something the children’s hospital here had said could be helpful in home care prior to hospitalizations, so we could avoid the hospital a little longer or all together when the pain reaches those levels. Now we don’t have a way currently to bridge care from Ohio to SD if we happen to be in need of those more intense pain medications.

A girl from our Pediatric Pancreatitis group did reach out to me and say what I need may be called Palliative Care. (So thankful for my group!!!) I found the number for that department and called earlier. The receptionist said they did just have a cancellation for Monday, but I would need a referral and she would need to check with the doctor if they could help. I MyChart messaged our doctor explaining everything and also asked for the referral. Then I had Daniel call his nurse to just to make sure we hit it from all angles, since we leave next week, the Palliative Care doesn’t have another opening till Aug/Sept, and once we are in Ohio our CA team can’t meet with us even via video call. The receptionist from the Palliative Care team was so sweet and said she is updating constantly to watch for Mylin’s referral and thinks the cancellation may have been meant to be for us. So I am hoping that right along with her. 🤞

On the plus side the Pain Psychologist at the pain management appointment was awesome. It would have been great to start with him 1 or 2 years ago before the pain was utterly and completely unmanageable. His vibe was much the same as our sweet Pain Psychologist, Dr McKillop, at Nationwide. He is also going to connect with Mylin’s traditional therapist and Dr McKillop to see how he can help us now that he is part of our team, as well as follow along with our TPIAT journey through MyChart.