Mylin’s Angry Pancreas

TPIAT CONSULT DAY 3-

TPIAT SURGERY CONSULT DAY 3-

(the typed out version): Meeting with Christie (she was the nurse that we did our 40 minute over the phone consult with to see if we were a good fit for this in person) and Dr. Nathan

Daniel and My said Dr Nathan had Jeff Goldbloom vibes. Lol!

He sat down for an hour and a half with us. We went over Mylin‘s history with pancreatitis. We went over pain and how we deal with the pain. He pulled up the video I shared on Mylin‘s pancreas page of the TPIAT surgery, but he self narrated it in real time going into detail about exactly what the surgery would entail. Including what that would entail with Mylins pancreas. Since Mylin‘s pancreas is both shrunken and covered in scar tissue. He went over some of the possible surgical risks and what the statistics were in his surgeries. He is one of the best doctors in the world for this so honestly, the risks are pretty small. We discussed what care would look like after the surgery. We would need to stay living in Ohio for 5 to 8 weeks. We will also need to return to Ohio everyone to three months for the first year. Then after the first year, we would come once every six months. After that, I can’t remember if it was after the three or five year mark, we would then start coming once annually. If we go through the surgery, Mylin will leave with not only an insulin pump and glucose monitor, but also a feeding tube. In some cases, the child has graduated out of the feeding tube but due to healing they aren’t unable to take it out until the stomach is completely healed in place. However, there is a chance Mylin will still be doing some feeds with the feeding tube. So there will be some education we need on that. It basically drives home what we already knew that even with the surgery, we will have a long road ahead. However, what many of you don’t know is we are already in a place where we are usually at the hospital, a specialist, or a drs at least once a week if not, maybe every week other if we’re lucky