Days That Count

*A quick heads up: In this post, Erin discusses a few specifics related to Wade’s progress + outcomes. For families walking through pregnancy complications, NICU stays and/or specifically a Bladder Outlet Obstruction diagnosis, please take care. We have learned a lot about the complexities of interacting with other families walking these roads. If today isn’t the day you need to absorb another family's/another baby’s progress- thank you for putting this aside and listening to your gut. We love you and we want to be sure our loved ones have the opportunity to set loving, healthy boundaries where needed.

We’re in our room, Phil’s watching weekend soccer while Wade floats in and out of sleep. We’ve got some equipment from the early days back at the foot of his bed again. Easter weekend was really peaceful and simple. We didn’t change up our routine that much, but we got a beautiful, relaxed day. We looked out our window to see a huge rainbow spanning across our view of the hospital and the Ronald McDonald House. And we love the weekend pace of the hospital. Just a few people are in and out of Wade’s room, the hallways are almost empty. We completed our first week of treatment back on 24/7 peritoneal dialysis (PD) after a surgery to insert a gtube (button installed on Wade’s belly that allows us to deliver nutrition and meds directly to his stomach) and to repair inguinal hernias. Following surgery, we took four days to let Wade’s belly heal before returning to PD. It’s always preferable to give more time for proper healing, but we gave as much time as Wade’s body would safely allow with his minimal kidney function. Monday morning, we woke up to a soaked onesie. Some kind of fluid was leaking out of Wade’s gtube, it was not fully healed. The fluid was tested, it was his PD fluid. My mind rushed directly to- “This dialysis is the reason we’re here and it’s ruined.” His course of treatment is one of the only availble paths for babies of his diagnosis to make the journey to kidney transplant.

There are small, daily bumps in the road here. And there are big, more dramatic hills to climb. My medical ignorance often causes me to mistake a bump for a hill. I’ve had instances of expending too much energy worrying over something that turns out to be a very common challenge or hiccup for a NICU baby. I’m learning to take my cues from our providers. This was the first time that our team has taken a moment to acknowledge that, yes, this is a setback. It’s not an uncommon one, but it does change the course we hoped we were on. We can get back on that original course, this just means we have to take a detour that we didn’t want to take. Our nephrology team is so thoughtful. So careful. So deliberate. We feel really safe in their decision making. It was decided that Wade needs hemodialysis (HD) again. This was the form of dialysis Wade used when he was first born. He received his treatment then using a catheter installed in his neck, with lumens that stuck up the length of his head behind his right ear. That catheter was removed once Wade had successfully transitioned onto PD. Seeing that line disappear was a big moment for us. Wade got full mobility back in his neck, he was transitioning onto a modality that was gentler on his body (and allows him to be out of bed and eating as normal during treatment). PD uses the peritoneum, the lining of the abdomen, to do the job of the kidneys. Fluid fills into and drains out of the peritoneum on a cycle. The treatment begins with small fill volumes, graduating to larger volumes week by week. Constant fluid moving into and out of the belly means that the healing of a tube and hernias can be challenging.

The team decided that to give his gtube and belly time to properly rest, we needed to return to hemodialysis. Stopping the flow of fluid in and out of his body from PD gives his sites time to heal and create stronger seals. This meant another surgery for Wade, and ultimately more time in the NICU. Wade had his catheter placed in surgery yesterday. Today, he’s back on hemodialysis. His modified aquapheresis treatments generally run from 6-8 hours, during which he can’t leave his crib or eat. We’ll stay on this from of treatment for a few weeks. Then we’ll return to PD, starting back at our lowest fill volumes.

When we saw that rainbow on Easter, I honesty remember thinking, “We’re not going backwards. There’s so much ahead of us, but we’re not going backwards.” The next morning, I felt foolish. That fluid stained all down Wade’s belly felt like a punch to the gut. I told Phil later that I’m becoming more aware of how much stock I was placing in Wade’s “performance.” My comfort came from our steps towards high fill volumes on PD. But this kid isn’t good because he tolerates dialysis well. He isn’t good because he smiles and laughs when his nurses come in for his first assessment of the morning. He isn’t good because his doctors share their encouragement with us. These things have been merciful joys to us. But they don’t make Wade good. Wade’s good because he’s here and he’s ours. He’s inherently valuable.

I expressed this exhaustion over the feeling of moving backwards to one of our favorite nurses. Her perspective was that yes, it feels that way. But every day, whether Wade’s in a NICU or at home, is a day closer to transplant. And that’s why we’re all here. Every day, grinding out this treatment. There are a finite number of days to transplant, and every day counts equally toward that goal. We can’t know how many days there are total. How many will be NICU days. How many will be at home. How many will feel like forward motion and how many will feel like five steps back. Right now we have 80 days under our belt and they all count.