One Surgery. Two Ureters. A Whole Lot of Answers.

Last Friday, August 21, Dave was finally able to come home after spending a week in the hospital receiving IV antibiotics for yet another kidney infection.

We were incredibly grateful to have him home, especially with surgery just a few days away. But this past week brought another heartbreaking blow for our family.

While Dave was in the hospital, his dad, John, came home with hospice and passed away Friday morning.

We are so thankful that Dave was able to call his dad and speak with him earlier that week. But there is no easy way to describe the sadness of losing a parent while simultaneously trying to navigate everything happening with your own health.

It has been an incredibly hard and sad time for our family.

So, naturally, we did what we do best: found something to distract ourselves.

On Sunday, I hosted a birthday dinner for my mom, which was approximately two parts “Cheri is 62!” and two parts “Distract the crap out of all of us before we have to be at Northwestern tomorrow morning.”

Surgery Day

By 6:45 Monday morning, we were headed downtown for Dave’s 7:30 AM pre-op check-in.

After answering essentially the same questions from approximately six different doctors and nurses, Dave was finally wheeled off to the operating room sporting another beautiful blue beret — also known as a surgical scrub cap.

While Dave received fentanyl, I was on my third coffee with an impending migraine.

We received the first text letting us know Dave was in the operating room, and then…nothing for nearly two and a half hours.

When my phone finally rang and I saw that it was the surgeon, I experienced what I can only describe as a minor, silent panic attack.

Dr. Lee had called because he had found something unexpected. Actually, several somethings.

Surprise! We’re Fixing Both Ureters.

Remember how we went into this surgery knowing that the left ureter was the problem?

Well, the right ureter apparently wanted to play, too.

Dr. Lee discovered that Dave’s right ureter was approximately 4 centimeters too long. That excess length created a serious risk that his bowel could loop around the ureter, potentially causing a life-threatening and emergent hernia.

This was not the ureter they had planned to operate on.

Dr. Lee called to ask for permission to revise the right ureter in addition to repairing the left.

Permission was, obviously, granted.

So while he was in there, Dr. Lee cut out the stricture on the left side and reattached both ureters to Dave’s ileal conduit.

And then came some very good news.

Because there was enough usable tissue from the right ureter, Dave did not need tissue taken from the inside of his cheek or from his intestine to complete the reconstruction.

This was a huge relief, particularly for Dave, who was very much not looking forward to the possibility of having fish skin sown into his cheek - 24/7 seafood restaurant, anyone?

And Then There Were Two

You may remember that Friday’s (8/14) testing had shown what appeared to be a random dissolvable stitch near the connection between Dave’s left ureter and his conduit.

Dr. Lee found it. Except…there were actually two stitches. One of them was inside the ileal conduit.

Neither stitch was the type Northwestern uses, and it’s possible these are stitches that have been squatting inside of Dave since his hernia surgeries two decades ago. 

Regardless of where they came from, both stitches have now been removed.

In the words of every infomercial actor anywhere, “But wait. There’s more!”

Dr. Lee also discovered that some of the abdominal mesh from Dave’s original hernia surgery, which had been revised during his January surgery, had grown into his stoma and was kinking that part of the urinary diversion.

So, in the simplest possible terms:

Dave’s insides were a frickin’ mess.

And somehow, Dr. Lee went in there and fixed a whole lot of it.

To the 14th Floor He Goes

Dave spent about an hour and a half in recovery before being transferred to his room on the 14th floor, where we were finally able to see him.

He was groggy from the anesthesia and definitely in pain. He also has four new incisions to add to the growing collection on his abdomen.

The team has started him on a cocktail of oxycodone, gabapentin, and Tylenol, and he has already enjoyed a Sprite Zero and may even be up for a package of graham crackers later.

Small victories.

And after nearly two months of having the percutaneous nephrostomy tube — AKA the Devil’s Drainage — attached to his back, Dave is finally free of it. Dr. Lee was able to remove the PCN during surgery, which is something he was really hoping would be possible. Having that tube gone will make his recovery significantly more comfortable and give him back some freedom of movement that he hasn't had since July.

What Happens Next?

Dave now has stents running through both ureters. They are sutured in place with something called a “red rubber.”

Which, yes, sounds like the name of a Conservative condom line.

One week from now, the red rubber will be removed.

Four weeks after that, the stents in both ureters will come out.

And six weeks from now, Dave will follow up with Dr. Lee.

There is still a lot we don't know. We need to understand the extent of the permanent damage to Dave’s left kidney and what that means for his long-term health. We also have a long recovery ahead after another major surgery.

While we are exhausted, we are also grateful, thankful, and relieved.

I’m slightly jealous that Dave gets the good drugs — until I remember that my Pinot Grigio doesn't require a stool softener.

Thank you to everyone who has texted, called, checked in, sent messages, fed us, supported us, and followed along throughout this entire journey. Your love and support have carried us through some really difficult days.

We are hopeful that today’s surgery will be a turning point.

Today we are immensely grateful for our family, our friends, access to some of the best surgeons in the country, and “red rubbers.”