Most of you may know this already, but transplant was cancelled. A week or so before our anticipated transplant date, Bear’s exit site started having some funky drainage. I brought it to his team’s attention where we watched it for a few days, then started some antibiotics orally while we waited on his culture to come back. A few days later, his culture came back and we switched to antibiotics that I had to administer in his bags of dialysis fluid. The hope was that it would clear and we’d be able to move forward with transplant.

Cut to a few more days later, and the drainage wasn’t clearing. In fact, it was worrying the transplant team so much so that the surgeon felt it was better to cancel transplant surgery. The transplant surgeon also felt like this was a tunnel infection, not an exit site infection and his dialysis tube would need to be pulled and replaced. Needless to say, we were devastated. Just devastated. He’s been on dialysis for nearly 3 years and we have never had an infection, so this was quite the blow.

After going round and round with his dialysis team and transplant team, we were instructed that the fastest and best way to get him back on track for transplant was to be admitted. This admission would involve IV antibiotics, surgery to remove his old tube, and a few days later surgery to replace the tube. Plus, he may have to have a bridge of hemodialysis while we waited on his little body to heal.

So we were admitted knowing that this would be his plan. Our first morning there, pediatric surgery came by to see his exit site. They weren’t truly convinced that it was a tunnel infection and needed to be replaced. Thankfully they agreed to present this idea of keeping the tube to his transplant doctor who after seeing it for himself, agreed that it didn’t need to be replaced after all. The next day, we were told they were sending us home on oral antibiotics specifically designed to treat his infection. Because Bear has such short dwell times on his dialysis, the team felt like the drainage wasn’t going away before because it didn’t have enough time to kill the bacteria.

We have been home now for over a week and his drainage is almost completely gone. We are back on track for transplant and anxiously awaiting a new date.