CODY'S FIGHT

  That moment when your Dada’s procedure went well and he’s feeling better! The radiologist was able to advance the drain to a more favorable position today, and expects the tube to be capped and the bag gone within the next 48ish hours! He mentioned that he had a very difficult time getting past the narrowing, but is pleased with the outcome today. He had to place a smaller tube to get past the stricture and expects the tube to need exchanging within the next 8-10 weeks. Looks like our five-year anniversary trip will be to the Midwest just in time for the autumn leaves to change. Co is already feeling better and his spirits have improved…he’s already cracking jokes and giving us a hard time with his witty banter. He’ll have labs in the morning to ensure his liver enzymes and bilirubin are trending down as well as a follow-up with his liver team for the next steps. Our tentative plan is to return home Monday, giving him the weekend to rest and recoup before the trek home. Thank y’all f

  Hey there Cody's fighters! Long time, no update - we've been totally consumed with soaking up this beautiful life with a busy toddler! Addie is doing incredible and Co is hanging in there, per usual. Since the last update, Co struggled with his symptoms through the end of the year and holiday season, earning him a trip up north to Mayo Clinic in January of this year. At that time, they performed a procedure that ballooned open a couple narrowed bile ducts within his liver. His team was hopeful this would provide him relief for roughly six months; he had roughly two successful months with decreased symptoms. Since March, Cody’s cholangitis symptoms came back with a vengeance. After a couple unsuccessful months of oral antibiotics, his team decided we needed to come back sooner than later. The plan was to go in endoscopically to place a plastic or metal stent internally to help open those ducts and allow the bile to flow appropriately. Quick and easy, right? We arrived in Roche

  Happy birthday to the one who makes us belly laugh and keeps us on our toes! I hope you have a wonderful birthday, Co, and I’m excited to see what year 34 brings you! We love you more than all the stars.  

Somehow, throughout this crazy journey, we have avoided a harsh Minnesota winter. That changed this year! As you can see, Addie Kate is a little skeptical of the snow but tolerated Mama's mini photoshoot nonetheless. Co has been struggling with his symptoms since his septic episodes this past summer and we are back in Rochester with a new game plan.  His liver team and the procedural radiologists decided to go in through his side, into the liver, and balloon dilate some of the narrow ducts/strictures that are the culprits of the chronic cholangitis. They are hopeful this will give him roughly 3-6 months of relief, possibly longer! It was mentioned that his PSC has worsened and that a transplant will likely be inevitable at some point in his future.   For now, we will take the wins and cherish the memories we made with Addie on her first plane ride and adventure to the Midwest!