Hurry up, and Wait

4 months on the transplant list. We spent 4 months waiting for this phone call. When you first get on the list, everything is really heightened. Danny was positioned towards the top of the list, so it could be any minute, and we must be prepared. We packed bags. We packed the dog’s bags. We looked at temporary housing near the hospital. We were scared to make plans because we’d probably have to cancel them anyway. Every phone call makes your stomach drop a little bit. We scrambled to get everything ready to leave at the drop of a hat, and then… we waited. After a while, the anticipation lulled, and honestly, life went back to normal. We unpacked some of our bags because we missed the clothes inside them. We made plans with friends. I went on work trips to Georgia. The phones rang without inducing anxiety. We just went back to living. Hurry up, and wait.

On Saturday morning, I was in the kitchen writing a grocery list for the following week because I had a flight to Georgia the next day, and Danny would need at least some basics in the fridge while I was gone. It was early enough that Woodman’s wouldn’t be a total nightmare (if you’re local, you know what I mean…) if I could just hurry up and build my list in the app. So you can imagine my frustration when this Madison number pops up on my screen interrupting my search for lunch meat. Normally, I see a phone number come up on caller ID, and it’s a hard pass. Double click the side button to decline, and move on. I mean, raise your hand if you get 10 robocalls each day from super-casual Kate trying to sell you on that new line of credit for your business you asked for. If I answer, I condone that behavior. I can’t contribute to that nonsense. Except for this morning. For some reason, this morning was the exception, and thank god I answered!

“Hi, this is the transplant team at UW Hospital. We’re trying to get in touch with Daniel Huml in regards to his status on the transplant list, and I’ve been unable to reach him. You’re listed as the next contact. Are you able to get in touch with him this morning?” Holy. Hell. Yes. Yes, I can. Poor Danny is asleep, so as calmly as I can in this moment, I open the bedroom door, turn the lamp on and whisper, “Babe. I need you to wake up. I need you to wake up and focus. I have the transplant team on the phone.”

The call was one of the weirdest calls I’ve ever listened to. I mean, I had an expectation, but I’d completely fabricated it in my head. I had nothing to go off of. I expected this “GUYS! Isn’t that so exciting? We have lungs. How cool. Hurry, come to the hospital. We need you here right now.” But no, it’s just a business call. No emotion. Just a matter of fact. “Hey, we’d like to extend a lung offer.” “Oh, cool. Let me check my schedule… yep. I can squeeze you in. I’ll accept. What time?” ….that wasn’t the actual conversation, but that’s the best I can do to help relay how weird this was.

The call ends, and we both sit there. Shaking. Crying. Scared. Excited. Happy. Unsure of what to really do next. Why did we unpack our bags? How necessary was that? Does the dog have enough food now? Ugh, I really need a shower. We need to cancel plans today. Why didn’t we prep the phone tree? We have to call our parents. SHIT, I’m supposed to leave for Georgia tomorrow! Why was that call so weird? 

Fast-forward an hour and a half, and we’re walking into admissions. They were expecting us, but the room’s not quite ready. Hurry up, and wait.

An hour and a half later, the room is finally sanitized and ready. We got settled in the room. The surgeon came in to touch base with us, and he let us know that he had mercifully waited until 6:30 AM to formally place an offer to us rather than making us scramble in the middle of the night to get to the hospital. My favorite part of this conversation was how excited he was about this opportunity. He told us he’d gotten several offers over the last couple months and none were the right fit for Danny, but he was very optimistic about these ones. We started doing blood draws for labs, started an IV, got an anti-bacterial bath and answered the same questions for three different people. It’s 10:30. Hurry up, and wait.

Any details about the donor that compromise anonymity are forbidden, so we don’t know very much. I hope to be able to share information at some point about the donor and their family if we are ever able to be connected to the family, but for now, all I can say is that their family was very much a part of our day spiritually. Regardless of the details, we all grieved for them throughout the day. From context clues in conversation, I’d gathered that the lungs were not in this hospital and we’re waiting for them to come from another hospital after they‘ve been procured there. They anticipated the donor surgery starting at 1 o’clock, and the OR wants us in a holding room in their wing so we’re ready to go when they are. It’s 1:30. Hurry up, and wait.

The holding room is dimly lit and kind of comforting. We had time to talk and just be together. It was one of the few times that I actually appreciated this whole ‘hurry up and wait’ theme. We met the anesthesiology team and the nurse that would be calling me with updates throughout the surgery until it was finally time to take him back. It’s 3:30 PM. Hurry up, and wait.

One thing I haven’t mentioned yet is the possibility of this all being a dry run. A dry run is when you go through everything I mentioned above (sometimes more, sometimes less) but for one reason or another the decision is made to cancel the surgery and the lungs are not transplanted. In this case, you simply get discharged and go back home to wait on the list again. It happens. So at this point in the day, we’d been there so long that we’re just hoping and praying that I’d get the call saying the surgery had started.

5:15 PM we finally get the call. His surgery was on! I don’t know what his experience was from 3:30 until 5:15, but I knew at this point he was finally resting and at peace for the first time that day.

6:50 PM. The first update call comes through. The donor lungs are looking good. They’re in sterile bags on ice, and the surgeons are working on removing the first lung. His right one. We later find out that there had been scar tissue built up on this lung making it a little more complicated to remove and causing a delay.

9:30 PM. The next update comes through. They got the right lung in place, and it pinked up right away with healthy blood flow. There are two surgeons in the room, and they’re starting to work on the left one.

11:20 PM. The next update comes through. The nurse calls me Stef. We’re friends now. BOTH lungs are in and pink with proper blood flow! They’re just checking everything over and making sure there’s no bleeding anywhere. Then they’ll start closing.

12:00 AM. The final update comes through. Everything looks great, and they’re going to start closing. We’re directed to go up to the consult room to wait for the surgeon to come to give us an update.

12:50 AM. The surgeon, who just had his hands inside Danny’s chest cavity removing organs and replacing them with new ones… (can you just read that again and process for a second?) comes in for a post-surgical consult. He let us know the surgery went well. The lungs ended up being a little big for his chest cavity so they shaved them down (not sure how I feel about that terminology), and ultimately, expect them to fit just fine! They ended up putting him on ECMO, because his lungs were so damaged that when they removed the first lung, the other lung wasn’t healthy enough to support his body alone while they got the other lung in place. He would stay on that for the next 24-48 hours to help his body recover and ensure the lungs were getting proper oxygen while he’s sedated.

2:30 AM. We are all zombies at this point. My parents, Danny’s parents and myself are all sprawled out in the tiny family room on the unit periodically falling asleep. The head nurse comes in and lets us know he’s back in his room and stable. We can finally see him. They prepare you as much as possible for this moment. There are a lot of machines and a lot of tubes. It’s as bright as the sun in this room. There are people everywhere monitoring his every second. I’ll probably never forget the image, but in the moment, we were able to find peace in seeing him for ourselves, touching him and getting to talk to him.

Honestly, the most magical part of all was seeing the full rise and fall of his chest. He hasn’t been able to take a deep breath in a couple of years. Before he went back for surgery we were comparing our chests and how deep I could breathe compared to him, and here I was almost 12 hours later seeing his chest actually rise and fall with air. It was incredible.

But now… we wait. Recovery is a long, daunting, curvy road. We are 2 days post-op. He has regained his coloring and a lot of his facial swelling had gone down. They worked on weaning him off sedation routinely to check neurological function. He was squeezing hands and wiggling toes. The nurse asked if he could hear me talking to him, and he nodded yes, which still makes my throat get tight. They have gotten him off blood pressure medications. An initial bronchoscopy with Bronchoalveolar lavage (BAL), the first of many to come might I add, came back with no sign of infection and healthy looking tissue and sutures inside. He is still on ECMO, Nitric Oxide, and the ventilator, but when the doctor told him they were working on weaning him off, he gave him 2 very slow, unprompted thumbs up that made us laugh. My point is that things are slowly but surely progressing the way the team wants them to.

I’ve said it a few times because it’s the only way I can explain where I’m at with this whole thing. If he’s okay, I’m okay. We’re just taking it one day at a time. We hurried up, and now we will be patient and wait.