I'm tired of waiting, but I'm afraid of how it's gonna end so I'm stuck here in between.

Bracing for bad news, and hoping for a miracle
While I'm fighting to believe

*I acknowledge that the hospital can be a very difficult place for many people. This post contains a photo that may be hard for someone with medical trauma to see. It is not graphic (there is no blood or gore), but it includes a ventilator and many other life sustaining medical devices.*

At Joey’s clinic appointment in September, we were told his liver health was “pristine.” PRISTINE. And this summer, he got the best colonoscopy results in his 15 year history of colonoscopies. What a freaking difference from this time last year.

Last September was when Joey was officially listed for a transplant and when we got the first call. Read more about that here.  

Last October, we decided to leave our church after months of difficult conversations.

Last November, we were wondering how to navigate Thanksgiving.

Last December, we realized our upcoming Disney trip was probably not the best idea.

Being over 10 months out from the transplant, it’s surprisingly hard to get back into the headspace of this time last year. I am grateful that I don’t have to live in a perpetual state of fight or flight waiting for calls from Henry Ford or making it to appointments, etc. Yet, it’s incredible how quickly I can feel sick to my stomach when hearing songs, recognizing scents, seeing certain items, etc. from that time. As I draft this, I’m listening to songs I know will trigger intense feelings. One of Joey’s deathbed favorites was Billie Eilish (he really leaned into it, am I right?), but a surprisingly hopeful track was “My Future.” And while Joey was gravitating towards Billie, I returned to one of my favorites, JJ Heller-- specifically the song referenced in the title and first two lines of this post.

Anyway. Here’s what happened after we got the call on January 29th.

Our hospital go-bags had already been unpacked and repacked several times so we didn’t really have a lot of prep to do after the call. We had a whirlwind of stressful, appointment-filled days leading up to this and were still reeling with information. (I refer to the time between Jan 19-29 as the lost days. We got 3 of the 5 calls during these 10 days.) I think we were just like… here we go again. My text to Lauren said, “Got our 5th call today. Nobody do anything yet though. Of course.” Whitney dropped some cinnamon rolls off for us and a couple hours later, we headed back to the hospital. They originally wanted us there at 4:00PM, but decided to have us come in earlier to check his sodium and give it time to level out if necessary. 

This is one of the only non-hospital related photos I have from January 2022 and it was taken an hour after we got the 5th call. I think that's the blessed Caprara Bakery cinnamon roll in the Tupperware on the table.

I don’t remember what we talked about on the drive there, but I do remember thinking Joey was being awfully chatty and I wished he would shut up. We seemed to be handling the anxiety of the situation very differently.

Once we got to hospital and started the preliminary prep, we made the usual contact with our bosses to keep them informed and we texted a few friends and family to let them know where we were, but otherwise we just waited. Harry Potter was on TV. Somewhere during the time we were waiting, we learned that the liver was coming from someone that experienced brain death (as opposed to cardiac death) and that they lived a low risk lifestyle. Later, we would learn that the donor was 37. To this day, these snippets of information are all we know about the donor.

At 4:30PM, someone told us the surgery would likely take place at 8:00PM. Around 6:00PM, we learned Joey's Covid test was negative. Overcoming this particular hurdle significantly helped reduce the fear of another canceled surgery… although in our minds, there was still plenty of time for something to go wrong. Every so often someone would come in with an update about where the surgeons were at with the procurement process.

One thing that was different about this call was that it was a Saturday. I remarked in a text to Lauren that I had never considered the fact that most surgeries aren’t scheduled for the weekend. The usual surgery waiting room was closed and the hospital itself was pretty empty and quiet compared to our other visits. It was weird, but I actually really liked it that way.

The doctors rechecked Joey’s blood at 7:30PM. At 8:00PM, a doctor that would be assisting with the surgery told us that the donor surgery had begun, the liver was out, and it looked good. Joey’s surgery was expected to begin at 9:00PM. 

Promptly at 9:00PM, he was rolled to the OR. I wish I could remember if we said something special to each other, but I don’t think it was anything remarkable. It’s likely I said, “See you on the other side” knowing that could mean on the other side of this surgery or the other side of this life. We’re realistic people, ok? Hope for the best, but prepare for the worst and all that jazz.

I found an empty café area to set up camp. It was bright as heck and most of the night, I was alone. Occasionally, a hospital employee would sit in one of the comfy chairs and make a phone call. Those ten hours that passed while Joey was in surgery felt like… approximately… ten hours. Time just moved along.

I continued to send texts to people here and there throughout the night. I restarted the Harry Potter series a few weeks earlier and tried to read a bit of Prisoner of Azkaban. At times, I pulled out a prayer card a resident had given me when she first learned about Joey’s health. It ended up being incredibly helpful, because at various points in the night, I wanted to pray, but didn’t really know what to say and having a bit of a cheat sheet was such a comfort. I ate some weird café food, because of course the snacks I packed didn’t sound good anymore. I got caught up on a few YouTube videos. Honestly, I felt content and was looking forward to doing whatever I wanted for several hours.

A few people told me I should try to get some sleep... which proved to be impossible. While my body was definitely tired, my brain was very awake. Around 2:30AM, I decided to try to rest. I knew I had a couple hours before the next update call from the OR so I set an alarm for when that call was anticipated, pushed a few chairs together, and attempted to sleep…

Ahhh the perfect recipe for a good night's sleep.

I dreamt the surgeons were cutting off Joey's head.

Ahhh how refreshing.

Something else I did to pass the time was watch an episode of Six Feet Under. I started a re-watch of the series early on in our transplant saga. What can I say? At this point, no one should be surprised by this penchant for morbidity. I like to really lean in and it has become a kind of comfort show for me. Especially after this experience.

You’ll need a bit of context for what I’m about to share. There was a season of my life when God was making it abundantly clear that I was doing too much and needed to come to him and experience rest. Matthew 11:28 showed up in the most absurd places over and over and over again– my favorite and most ridiculous time being my horse’s stall for the horsemanship week of camp that I specifically asked not to lead since I don’t like horses. It popped up so frequently that it quickly became my favorite verse– because it’s a great verse and also because I associate it with a season of growth in my life. That was over ten years ago.

So picture this. Joey is in surgery. I am alone in the hospital. It’s the middle of the night. I can’t sleep. I have read enough Harry Potter and eaten enough weird café food. It is now time to watch an episode of Six Feet Under. I’m only half focusing considering I am both exhausted and on high alert. Father Jack is giving a eulogy in the background of a scene and I hear him say, "Come to me, all you who labor and are burdened and I will give you rest."

I was shook... as they say.

To hear that verse referenced in this moment was wild and comforting and funny and special. Whether you call it a sign from God, serendipity, or pure coincidence, it was encouragement from an unexpected place and it gave me hope.

The rest of my time waiting was actually pretty boring. Every couple hours, I’d get a phone call from the OR, then send texts about the update, then try to busy myself with something else until the next call. During one of the update calls, they told me “the old liver is out” and I could not stop thinking about how somewhere in the building, Joey was cut open on a table liverless. Obviously, this had to happen as part of the surgery, but to think about how a vital organ was simply no longer in his body was totally nuts. Medical intervention is wild. I would have another realization a few weeks later that I, too, have a liver. I’d spent so much time thinking about, reading about, taking notes about, and asking about Joey’s liver, that I never gave any real consideration to the one that exists inside me. I still cannot get over how amazing and bizarre the human body is.

At 5:30AM, I spoke face-to-face with the surgeon. These are my notes from that conversation.

• "Overall, good."
• "dialysis to monitor sodium- good"
• "lots of bleeding- mopping up"
• "weird PSC liver- they always look weird"
• "If I don't hear anything by 7, reach out to front desk nurse and have them call up"
• "Bile is forming. Clotting."

Around 7:00AM, I could enter the transplant ICU to see him. I asked the nurse escorting me if she could describe what I was about to walk into. I tried to prepare for this day by consuming any media related to transplant that I could get my hands on, but this was no longer someone else's story that I was observing.

We were now officially living in the post-transplant part of our lives.

"You're the only one who knows how to operate my heavy machinery."

After an awkward interaction about all the bags I was carrying (they didn't realize I had stayed in the hospital all night), a nurse gave me a folding chair that I felt like I needed to keep in a corner far away from Joey. I asked if I needed to do any other sanitizing (nothing extra beyond clean hands and continued mask use) or if there were rules about having my phone out (no, but here's a sanitizing wipe for that, just in case). I didn't know if he could hear me or how alert he was. I didn't know if I was allowed to touch him.

The obligatory hospital hand photo. So much of my contrarian nature has been tested by this experience. 

I was given permission and encouragement to interact with him so I moved the chair closer to him and held his hand. You can see in the photo that he is restrained. This is because they kept him on the vent for a little while post surgery in case they needed to take him back to the OR. The goal being to minimize the amount of times they'd have to irritate his airway with intubation.

There are a few things that stick out vividly in my memory as he started to wake up. The nurses were asking him questions that apparently he was supposed to answer by nodding or shaking his head. He wanted to answer the questions verbally and was reaching up towards his mouth to remove the vent, but obviously couldn't due to the restraints. He used what he could remember from the ASL alphabet before eventually resorting to spelling out his responses by writing with his fingers in the air. If I'm remembering correctly, I think he tried to make a joke about wanting the vent out as soon as possible.

Remember how on the drive to the hospital I wished he would shut up? That thought haunted me as I watched him struggle to respond to the simplest questions. The ability to speak was literally taken from him and having to witness it knowing what I'd so flippantly wished for not even 24 hours earlier was horrible.

Another very clear detail is that his eyes stayed closed for a really long time. Even after he was taken off the vent and could start to communicate with spoken words, his eyes were shut.

I stayed at the hospital with him all day on January 30. There were numerous blood draws, x-rays, and other tests done. Joey was given ice chips and a few popsicles and lots of blood products. I was given a nicer, reclining chair so I could get some rest before driving home later. I can't remember much else about these first few hours post surgery at the moment.

What I do remember is getting home that night, eating too much buffalo popcorn chicken from Sonic with Whitney and being woken up to a call that Joey needed to be taken back in to surgery. And I was genuinely afraid I wasn't going to make it to the hospital in time to see him... or use the bathroom. Fun!

Check back next time for a riveting story of tears (me), debilitating bowel discomfort (also me), and more surgery (Joey)!

And now, a word from our spoonie: "I was drained and refilled six times and all that blood product cost $69,956. When you donate blood, TAKE ALL THE FREE STUFF."