We have entered the single-digits in our countdown to transplant. We will do eight more nights of our family dialysis routine.
Get a weight on Wade. Machine on. Bluey episode on. Get a blood pressure. Pull out bags of nightly fluid. Hook up gtube for a 6 pm feed. Mask on, sterile hands. Administer heparin. Pull a cassette and a drain bag. Confirm nightly treatment. Mask on, sterile hands. Load the set. Mask on, sterile hands. Connect bags. Priming. Gtube cleaning. Vesicostomy care. Jammies. Mask on, sterile hands. Connect the patient and go. Goodnight moon. Little Blue Truck. Bluey Book. Bingo Book. Check patient line. Goodnight.
Learning Wade’s nightly routine has made us feel so empowered. If we could only meet our past selves, we’d offer them so much compassion. We spent a lot of weeks in the NICU asking permission to hold our child. It often felt like we would never be enough for him. Fast forward to today- we’ve never felt more empowered to care for Wade, and we’ve never understood more clearly that we are in fact, not enough for him. We feel pretty clearly that we were put here to be Wade’s parents. We can do a lot for him, and we are learning more every passing month. That said, no one can make him light up the way his Aunties and Uncles do. You’d be hard pressed to find a kid more loved by all his grandparents. He has friends and cousins that know all about the ways his body is different from theirs. Last week at the library, 3 pm rolled around. I asked Wade’s cousin Susannah, “Do you want to start Wade’s snack through his tube? He needs to eat now!” She rolled her eyes and said, “Ugh, YES. I’ve been DREAMING about that!” Susannah doesn’t know that my eyes water every time she jumps out of her chair to help with Wade’s feeding tube. I really look forward to the day I can tell Adult Susannah how much her love for her cousin has healed my heart.
The way our closest supporters love Wade is a very real example of a dream of ours that’s come true. Before we were able to bring Wade home from the hospital, our hope was that Wade would be surrounded by those that see his differences, and love him in a way that dignifies and empowers him. We have that in spades. So now we are calling on our faithful loved ones to hold us up once again. It’s time for transplant! In many ways, this milestone will be a line of demarcation in Wade’s life. His schedule will no longer revolve around his dialysis treatment. His body will function normally in so many ways that it never has. We can hardly believe we’re here. And in truth, there is some fear of the unknown! While we yearn for that post-transplant life, we know our routine on this side of surgery. We know how to do this, how to care for Wade. Being a transplant patient comes with its own set of risks and complications. Right now, we are doing our best to listen to the wisdom of those that have gone before us. We are asking questions of our friends that are weeks, months and years down the road ahead of us. We are remembering all the people that got us here. We are thankful for the people that will carry us further.
Wade’s closest providers have been giving him extra love and pep talks in the past couple of weeks. We feel so calm as they, one after another, tell him,
“You’ve got this, buddy.”
“You’re going to breeze through this.”
“You’re so ready, just look at you!”
Wade has been prepared, not just physically and medically, but his heart is ready too. We can’t ask him about it just yet, but we feel really confident that he is comfortable in a hospital setting. This is certainly not a given for NICU/transplant/medically complex kids. The providers that surrounded him at birth gave him so much love. He implicitly knows he doesn’t have to fear people in scrubs and masks. The providers that took over his care here in Tennessee have earned his trust and become his friends. He doesn’t fear being rolled out of a room in a hospital bed by himself.
As you’re thinking of us, think of our providers, our surgeons, our nurses, our team members. As you pray, pray for Wade’s body to absolutely thrive with his new kidney. Pray for our brains, we know memories of past procedures will hit us hard as the anesthesiology team walks into the room on the morning of surgery. Thank you for being Wade’s friends. Look how far we’ve all come!