The Last Thing We Need is His Ears Being Tickled

Months ago, I joked that we'd have to make sure we squeeze in a haircut between getting The Call and heading to the hospital because Joey tends to get irritable when his hair is too long and heaven forbid we aren't consistent with his hair trimmings and he has to add that frustration to the rest of his recovery. I was expressing this sentiment to Lauren recently and said, "The last thing we need is his ears being tickled" without a hint of sarcasm.

And you can bet your bottom that we scheduled haircuts after being sent home from the hospital with the old liver still in Joey's torso. While we're waiting for the thing we can't control, we're going to finish up as many of the things we can.

Here's what happened. We found out Joey was officially listed on a Friday evening. Joey and I discussed some new questions we had now that he was listed and he made a note to ask his transplant coordinator sometime the following week. I also mentioned that we had better start getting the hospital 'go bag' ready and started a list of things we might want to pack. This is the only prep we did for a potential call because we assumed there would be months until we really needed to be ready. Plus, we were going out of town the next day anyway and couldn't be bothered. 

Saturday, we drove to Ohio to surprise Joey's mom for a milestone birthday celebration. The surprise was successful, the dinner was great, and the conversation was lovely. We headed back home on Sunday and went about our work routines on Monday. 

Joey has been working from home since March 2020. Occasionally, he has to be on site for certain parts of his job that can only be done in person and on Monday, September 20th, Joey had to meet with a supplier (in person) to light a fire under their... you know... 

I had just finished leading the morning exercise at work when Joey called. He sounded a little odd and explained that Henry Ford* called and offered him a liver. Joey told me that when he answered, he was expecting them to check in and give an opportunity to ask questions. He certainly wasn't expecting an offer and he didn't know how to respond. As you might imagine, time is of the essence in a situation like this so as much as I wanted to be comforting and supportive and calmly walk him through his feelings, I also felt a need to push him a little to make a decision. 

CONTENT WARNING // Death is discussed in the following paragraph. Skip to the photo of Joey standing next to his bike if you'd like to keep going without this content.

A view of Detroit from Henry Ford Hospital. Also, a chance to think about skipping the next paragraph.

You may be thinking- But why would you even hesitate? Well, we didn't expect it to happen this fast. It was scary to think everything could be changing so quickly and with so little prep. We also didn't get a chance to discuss what kind of livers we'd be willing to accept. There are technically three different categories of donors. A living donor (more about that in another post) and two versions of deceased donors (cardiac death and brain death). Each kind of donor involves some unique risks. For example, the liver Joey was offered that morning was from a person who qualified as having a "risky lifestyle." We aren't given more details than that, but it usually means this person may have spent time in prison, gotten a tattoo in the last month, or engaged in other activities that raised the risk for Hepatitis or HIV. These last two things are tested for beforehand (and were negative in this case), but we know the person had what the hospital defines as a high risk lifestyle. This donor also suffered a cardiac death and timing for procuring major organs while they are still viable is very specific in this case.

Compression socks have become an essential item in the Nick house.

I did my best to help him organize his thoughts and waited for him to call the hospital back. During this time, I was pacing outside the building, shaking my hands as if trying to wake them from falling asleep, and decided to call my number one support person: Lauren. What followed was a domino effect of people prepping to leave their various workplaces while waiting for Joey's update.

He called me back and told me that the coordinator he spoke with helped him make his decision by quoting the office (specifically the scene where Michael Scott steals Wayne Gretzky's quote about missing 100% of the shots you don't take) and we were now both wrapping up our responsibilities at work and racing home. I called Lauren and she, too, was heading home to look up plane tickets and wait for the official word to purchase them.

This part is kind of a blur still but 

• We used the list I started to grab things we thought we might need for the hospital (this included a Cat Butt coloring book for me to use in the waiting room and a stuffed Link from The Legend of Zelda).
• Joey shaved (not knowing the next time he'd be able to) and taught me how to set his work away message.
• Joey asked me to make a list of things we had left unfinished which included contacting the window warranty people, deciding which set of nice knives we were going to send back before the return period ended, getting the new tires put on my car, and installing the custom closet doors when they arrived. He also gave me suggestions on who he wanted to have help me with all this.
• I switched my glasses to the pair Joey likes better.
• We listened to our usual driving music on our way to the hospital and I asked Joey if he thought the transplant team would take a picture of his liver for me (I'm happy to report that they would).
• I confessed the one secret I'd be keeping from him-- that I was changing all of the lyrics of this song to be about him and his liver. I'm not totally done with it so it's still technically going to be a surprise, but I wanted him to know my plan... just in case.
• He got prepped for surgery (Covid test, X-rays, IV, etc.) and then we waited. He perused satirical articles about using a GameCube as a weapon and I... well... I don't remember what I did. 

It's Dangerous to Go Alone! Take This!

While one of the surgeons was giving us the cliff notes version of what was about to happen, she got a call saying the liver was no longer considered viable. Joey had the foresight to ask the likelihood of the transplant taking place considering the type of donor we had, so we knew it was going to be a 50/50 chance of working out this time. We went from confusion and panic, to a sense of calm and nervous excitement, to disappointment and exhaustion in a few hours. And not to be a Positive Polly (because ew), but we really do have so many things to be grateful for in the midst of all of this. 

So we left the hospital, went out for a fancy dinner, did some grocery shopping, and got back to boring old reality.

In the weeks that followed, we got haircuts, had dentist appointments, finished a few home projects (and ending up starting some new ones 🤷), closed the pool, got a more reliable phone, tested and decided on the knives, documented the procedure for contacting Joey's work for short term disability, took the AC units out of the windows, got the new tires put on my car, and ran a hundred other small errands. Essentially, Henry Ford lit a fire under our... you know... 

When you've pulled the hoodies out, it's time to close the pool.

Now we're experiencing what I think is the hardest part of all of this: living each day like it's totally normal. Agreeing to things weeks in advance while wondering if we're actually going to be able to do it. We have to keep living, but it could all change with one phone call. And really, that goes for any of us. 

Wow. That's a heavy sentiment to end on. I think I've got something for a bit of levity here instead. The surgeon explained to Joey that his scar will look similar to the Mercedes logo. He replied, "You know I work at Ford, right?"

And now, a word from our spoonie: For a day, I thought I would no longer have the eyes of Jar Jar Binks.

*Henry Ford Hospital is the transplant center we're working with. It's funnier to just say Henry Ford.