That Dang Stricture
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 Rochester Sunday night for a quick, outpatient procedure Monday morning. Thirty minutes before his start time, his liver team called and asked us to come in to discuss the new plan prior to the procedure. We learned that after further review by the radiology procedural team and his liver team, they did not feel confident in a successful stent placement at this time due to how sick he had become and the internal organ rerouting from his resection surgery four years ago.
The new plan: percutaneous (through the skin) internal/external biliary drain placement. They are recommending the drain stay in for at least 3 months, and exchanges every three months, if needed. This is the same drain Cody had when he was first diagnosed and after his resection surgery a few years ago. To say he is bummed by the news is an understatement… in his eloquent words, “ I hate that #*%&#@! tube”. However, he was begrudgingly compliant and listened to his team that this is the best option to get his bilirubin down (currently up to a 7.4) and feel better quickly and longer.
In recovery, his procedural team informed us that the stricture and scarring have advanced significantly over the past 6 months; likely from the PSC and previous radiation. Due to the heavy scarring and stiff liver, they were unable to advance the drain as far as they were hoping. They were able to advance it enough to allow for the bile to drain externally into a bag, but they are taking him back in for a second procedure, tomorrow, to hopefully advance the drain enough to allow for internal drainage (so the portion of the tube that is on the outside is able to be capped and not flowing to a bag).
Best case scenario: the drain will be able to function internally and the ducts will scar open around the tube so when it is pulled, there is a patent flow of bile. We are hopeful this will only take three months, but there’s no guarantee.
It’s been a tough week for Co. It’s been a couple years since he’s had to have this tube and it’s pretty miserable for him. He was admitted overnight after his procedure for monitoring and pain control, and he’s resting semi-comfortably now. He’s been a trooper through it all, but there was no chance to mentally prepare for this week like we’ve had (occasionally) in the past. He handles it with pure grit and I admire him for it. Addie Kate has the strongest daddy there is.
I’ll keep everyone updated on how things go tomorrow and will work on getting some updated blog posts up as well. Thank y’all for being here and keeping Co in your prayers and sending all the good vibes.
All our love,
Co, Addie, & Madee