(Originally shared February 22, 2024)
Final day of appointments and we survived! Today we spent the first two hours with endocrinology talking all things diabetes. While in a perfect world Jacks body welcomes his islet cells back into his body and he is not insulin dependent, we need to be prepared for all situations. The first three months he will be 100% on insulin while his body rests and his islet cells get a chance to settle. By discharge, the endocrinologist said she usually has a general idea of how well each patient is taking to the islet transplant, but it could take up to a year to know. With that in mind, we will be taking a crash course on diabetes management while Jack is still inpatient so we will be ready by discharge. The diabetes management team spent an hour walking Jack through all the pump and monitor options, and obviously Jack has already decided he wants the tubeless one that he wouldn’t have to remove when swimming… we shall see what we actually end up with, though. Once our surgery date is provided I’ll be diving deep into my research. Obviously if you have input, send it my way because this is a new world for me.
We had a couple hour break which gave Jack time to catch up on his homework and for me to crush him at connect four. We finished our appointments with infectious disease where we talked living a spleen-free life. Jack will need some extra vaccinations, and we will be on a pretty strict fever protocol for the first year, but we were both pleasantly surprised to learn that living without a spleen isn’t really *that* bad. Plus, there’s a 10% chance he will keep it and then he will just be a couple years ahead on his vaccinations.
Our evaluation is officially complete. In theory, our main doctor will be presenting Jack’s case tomorrow and in a perfect world we should have a surgery date by end of day. I’m trying to keep my expectations realistic, so if we don’t get the call tomorrow, it should be soon. We are taking tomorrow to relax and recover from the information overload in Indianapolis before Jack’s climb comp on Saturday and we are both looking forward to a mindless day of fun. We will update when we have a date, then it’s just waiting until go-time.
To read previous posts about Jack’s health journey visit https://www.caringbridge.org/visit/jackwilk