Mayo Trip Update September 2020

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 Co went under for a Cholangiogram (a procedure where they access his liver through his side and inject some fancy dye to light up the bile ducts like a Christmas tree and identify any narrowings or blockages).

And, would you believe me if I told you they didn't find a blockage? That his surgical site looks good and isn't causing a fuss? Well, it's true. They didn't leave a drain, they weren't able to do much of anything because there's no specific blockage. Co is now scheduled for a liver biopsy tomorrow afternoon to look for an autoimmune disease that could be the culprit of his symptoms. His team is also investigating the medications he's taking to see if those might not be playing nicely with his baby liver.
This process is long and tedious, but we have full faith in his care team at Mayo. I cannot begin to express how grateful we are for a team that truly cares about Cody's well-being and is openly communicating with us multiple times a day.
Co is recovering well from today and is much happier knowing that he doesn't have to have "that {insert colorful word here} tube" in his side. We're making homemade pizzas and watching vampire movies this evening and will continue to take this journey one day at a time.
People keep asking how we are doing and the best way to describe it is like riding a rollercoaster but ending up in the seat with the squeaky lap bar that doesn't latch down quite far enough, and the carnival worker gives you that toothless smile and waves as you take off into Lord knows what. You're not quite sure if you're gonna make it out alive, but you hang on for dear life anyway and in the end, it turns out to be okay.
Thank you to everyone for reaching out and for the endless love and support. We might not always respond to each comment or message, but we do see them and they truly make this easier.

Sleepy Coco after 3 procedures in 4 days


UPDATE 9/23/2020:
The liver biopsy was extremely helpful in ruling out several disease processes. There’s no evidence of autoimmune disease, PSC, or cancer reoccurrence. There’s also no longer any signs of infection! Co’s bloodwork has greatly improved, and his symptoms have lessened as well.
It turns out, his bile ducts are very fragile and temperamental as a result of everything they’ve been through, especially after radiation. On occasion, the ducts get “sick” (as it was described to us; our hepatologist is a man of few words lol), and become inflamed causing a backup of bile in the liver. Cody’s been prescribed a new medication regimen and we will continue to monitor things and check in with Mayo in a month.
We are so, incredibly grateful for the care we receive from Cody’s team at Mayo. We can honestly say that every dollar spent, mile traveled, and moment away from home is entirely worth it to be treated by the best!


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