Well here we are. Today is one year from the day that I took Nathaniel to Pottstown Memorial for abdominal pains.
…
I thought I’d have a lot to say, but all the words are hanging back, looking at each other like “you go first”, but nobody’s stepping toward the door.
…
He’s alive.
He’s alive and he’s healthy for a transplant patient in his first year. His weight’s up to the 145lb range. Still about 10lbs below the maximum the doctors want him to be, but they’re perfectly ok with 145 because they don’t want his weight to get high enough to stress his kidneys and liver. There are no signs of rejection, the liver numbers overall look great, and his lungs and digestive system — the two usual troublemakers — have both stayed quiet.
We had a small scare this week when his potassium started to play games, but the doctors have a plan to keep that from happening again, and Nathaniel was able to get his potassium back to normal values within 24 hours.
Every two weeks I have to wrestle with CVS and Penn Medicine to get Nathaniel’s pain medications. It happens so consistently that I have built it into the schedule.
He’s down to roughly 20 oral medications each week. (That’s 20 different prescriptions, not 20 pills. It’s waaaay more than 20 pills.) We’ve figured out a method for filling the pill boxes and keeping everything up to date. I keep a set of spreadsheets with his doctors, meds, etc. (Here’s the template if you need it.)
He averages one doctor’s appointment most weeks, though when they show up they tend to arrive in packs. We’re at CVS 2-3x a week. He’s got some dental surgery coming up to swap out his last nine original teeth for dentures, but no date yet.
I can’t say things are quiet (in part because I’m superstitious, I admit) but they are relatively under control.
…
Nathaniel and I have both been praised frequently for our resilience throughout the shenanigans. It’s my personal opinion that you can’t build resilience unless you’ve had to face traumatic situations. Together we’ve faced traumatic situations frequently enough that we were able to be resilient through the surprise! liver transplant and the recovery and the trip home. We’re still building resilience. We’d like to stop now. Can we stop? Does anyone know how to set the “trauma” setting on “low”?
…
We could not have built that resilience, that strength to push through, without our parents, our brothers and sisters (including our siblings-in-laws), and all of our friends. A special thank you to Matt and Beck Gustler who spent so much time with Nathaniel at the hospital when I couldn’t be there, to Tina and Liz, to Beth and my mom who were always available to take a panicked phone call, to Tony and Elise Makowski for everything they did organizing and hosting pinball tournaments. To everyone who visited, called, played pinball, and helped in any way at all. Thank you. We wouldn’t have made it this far without you.
We are exactly where we need to be. Now we need to figure out how to stay here.