We are thrilled, thankful, and relieved to have gone from transplant to discharge in the span of a week. This week’s events have been incredibly life-changing for our family. 

 

Last Sunday night, we were slowly making our way through our final night of dialysis treatment. We pressed go on Wade’s machine, and somehow his transfer set (hardware that has been in Wade’s belly since birth, used as his connection for nightly treatment), just completely disconnected from his body. This shouldn’t be able to happen and can be a huge risk to Wade’s belly. That moment felt like the strangest, least-expected end to our run with dialysis. Wade’s team had us clamp his line and skip our last night of treatment. It felt like one more nudge pre-op saying, “Don’t forget- you can do everything “right” and still ultimately have no control.” The temptation is always to ask for predictability in exchange for “good behavior.” Instead, the reward is always chaos, always the unknown and unexpected. 

 

We began last Monday morning with an early wake-up call. By 5:30 am, we were on our way into the hospital. After finding a parking spot, we read our family liturgy (“Morning of a Medical Procedure” from Every Moment Holy). From there, knees knocking, we made our way into Vanderbilt Children’s. Looking back on Monday morning, we realize the blessing of the medical conveyor belt that takes over the morning of surgery. As long as you can manage to get your feet across the hospital threshold, the experts will take over. We were met with a lineup of warm, excited, comforting providers. Wade and Erin‘s pre-op rooms were side by side, and our nursing team allowed the three of us to spend the hour before the big moment almost totally together. Wade was calm but quiet. He kept a hand on both of us all morning. It felt like he felt a big moment coming, but didn’t approach it with fear. His body and his heart were ready for this day. 

 

After about 4.5 hours of anesthesia, removal, transfer, and transplantation, Erin and Wade were both safely out of surgery. The week following the procedure has been truly as smooth as we could have possibly asked for. Wade’s surgeons have said that his boy loves this kidney. There have been lots of sleeping, many bouts of heavy tears, and emotional extremes that have run the gamut. Wade’s spirit is really content. He has big feelings, he lets us know when he’s out of patience. And generally, he loves and embraces everyone that walks into his hospital room. 

 

The task at hand is now to find the ideal balance of medications that keep Wade protected and his immune system suppressed. Transplant patients live their entire lives on immunosuppressant drugs. These medicines keep the patient’s body from rejecting the foreign object in their body- their new organ. Without these drugs, the body will try to fight the organ. Wade will be in the hospital for lab draws and checkups 2-3 times per week for the next several months. Over the course of the first year, his visits will become less frequent and the dosages of his meds will gradually lessen to an appropriate threshold. 

 

As a family, we are feeling that inpatient itch to get home, get cozy, and learn our new routine. A break from the constant medical attention will be so welcome. We are also leaving with hearts full of thanks for those who took care of us on every possible level this week. What was true this week has been true all along- we are never forgotten. We are never alone. We are so lavishly blessed.