Hope to Hurdles

The Surgery Was a Success. The Discharge Was a Disaster.

After more than two years of waiting, Frankie finally underwent his long-awaited jejunostomy takedown. Dr. Mercer successfully reconnected his bowel, and for the first time, his digestive tract has the opportunity to function as one continuous system again.

The surgery itself was intense but went well. I was starting to worry after the surgeon said they’d be in and out in two hours. Then three… then four… then five hours went by.

Finally, Dr. Mercer met me in the post-op room with a smile on his face and said things had gone well, although my boy had certainly given him a run for his money.

Dr. Mercer told us Frankie has about 100 centimeters of healthy small intestine remaining. While that’s only about one-third of what a child his age would typically have, he was incredibly optimistic. He believes the bowel is excellent quality, that it will continue growing as Frankie grows, and that with intestinal adaptation we should be able to advance G-tube feeds and eventually get him off TPN.

Those words gave me hope I hadn’t felt in a very long time. Unfortunately, that hope was overshadowed almost immediately after we left the hospital.

Before we were discharged, we were assured that everything would be “tied up in a bow.” We were told Frankie’s outpatient TPN, medications, lab orders, and follow-up plans would all be arranged before we drove home. None of that happened. Not a single outpatient order had been placed.

We arrived home Friday night. By Monday morning, I was in panic mode because we were almost out of TPN and medications. Instead of focusing on helping Frankie recover from one of the biggest surgeries of his life, I was making desperate phone calls trying to figure out who was responsible for what.

Primary Children’s stepped in and did everything they could to clean up the mess, and I will always be grateful for that. But because nothing had been arranged before discharge, Frankie’s routine labs weren’t drawn until Wednesday. By then, his potassium had fallen to 2.0—severe hypokalemia. We headed to the Emergency Department and have been inpatient ever since.

Thankfully, Frankie has remained in good spirits through all of it. We were able to replace his potassium before it progressed to something even more serious, and for that I am incredibly thankful. As if that wasn’t enough, we eventually uncovered something I still struggle to comprehend.

When Nebraska discharged us, they sent temporary TPN orders to their outpatient infusion pharmacy so we’d have enough bags to get home. Somewhere between the inpatient and outpatient teams, Frankie’s potassium was changed from 60 mEq to just 16 mEq.

Because labs weren’t drawn Monday due to the lack of discharge orders, our team at Primary Children’s did the only thing they could do to get us through—they reordered the exact TPN recipe that had been sent from Nebraska’s outpatient pharmacy. No one caught it. I had absolutely no idea the TPN we brought home was drastically different from what Frankie was actually supposed to receive.

At the same time, Frankie’s stomach wasn’t emptying properly after surgery. His G-tube also turned out to be too large, allowing gastric contents to continuously leak around the stoma. Instead of moving through his intestine, stomach contents were collecting until they either poured into his drainage bag or came back up as vomit.

Every ounce of those gastric losses contained electrolytes. So we had the perfect storm. A child losing enormous amounts of potassium through gastric drainage while simultaneously receiving only a fraction of the potassium he was intended to receive in his TPN. This wasn’t one isolated issue. It was multiple system failures happening at once.

Since being admitted, Frankie has received more potassium riders than I can count. He’s undergone multiple imaging studies, we’ve begun correcting the electrolyte errors in his TPN, adjusted his fluid volume, and started medication to help his stomach empty more effectively. His potassium is finally approaching normal.

This could have ended very differently.

Frankie has always been incredibly sensitive to fluid shifts and electrolyte changes. Nebraska also increased his TPN volume from approximately 1,300 mL to nearly 1,900 mL before discharge. Whether every change was intentional or whether some were communication errors, the reality is that his body did not tolerate them, and we landed right back in the hospital less than a week after getting home.

I remain grateful for Dr. Mercer and the surgical expertise he brought to Frankie’s case. I truly believe he gave Frankie an opportunity that could change the course of his life. But excellent surgery does not excuse a poor transition of care.

Perhaps the hardest part has been Henry. He got his mama and his brother home for just six days before another goodbye. Another hospital room. Another interruption to the little bit of normal childhood he deserves.

I’m angry because so much of this hospitalization was preventable.

I’m angry because I spent the first days after a major surgery fighting a broken discharge process instead of helping my son recover.

I’m angry because mistakes involving TPN electrolytes can have life-threatening consequences.

And I’m angry because families caring for medically fragile children already carry an impossible burden without having to catch errors that should never reach them in the first place.

At the same time, this experience has reminded me that no hospital is perfect.

Ironically, while we’ve been admitted back at Primary Children’s, Frankie was playing in bed, leaned forward onto some pillows, and accidentally decannulated himself. His trach came completely out.

I immediately hit the call light and yelled, “Trach out! I need help!”

No one came.

About fifteen minutes later, a nurse in training walked in—not because anyone had responded to the emergency, but to turn off the call light. Thankfully, I was there and was able to immediately replace his trach.

It was another reminder that, no matter where we are, parents of medically complex children often become the final layer of safety. We know our children, we know their equipment, and we stay vigilant because sometimes there simply isn’t time to wait.

Despite everything that’s happened over the past few weeks, I haven’t lost sight of why we made this journey in the first place. Just a few weeks ago, Frankie’s intestine wasn’t connected. Today, it is. Just a few weeks ago, life after TPN felt like a distant dream. Today, one of the country’s leading intestinal rehabilitation surgeons believes Frankie has enough healthy intestine to one day leave it behind.

The road home was far rougher than it should have been, and this hospitalization should never have happened. But we’ve overcome impossible odds before, and I believe we’ll overcome these too.

For now, we’ll get his stomach emptying better. We’ll get the right-sized G-tube. We’ll stabilize his electrolytes. We’ll slowly begin advancing feeds and teaching his intestine to do the job it was always meant to do.

This wasn’t the chapter we expected to write after Nebraska. But I still believe the story we’re writing is one of hope. And if Frankie has taught me anything over these last two years, it’s that setbacks don’t get the final word.