Cocktail, please…

It is Saturday, which means we made it a whole week! On Monday, it felt like we’d been here a month. Today I can’t believe it’s already been 7 days.

Sunday was a low-key day. Danny’s surgery was completed early Sunday morning so they were just administering meds, checking blood sugars, running labs and monitoring his body and ECMO. I would say the hardest part of Sunday for me was leaving him at the hospital at the end of the day. I knew he was in great care, but it was really sad leaving him there alone.
I mentioned checking blood sugars. Fun Fact: It’s not uncommon for patients to develop diabetes after a transplant because the steroids increase the body’s release of glucose and cause insulin resistance. It’s typically manageable and can go away as the steroid dose is decreased and the body adjusts, but for now, he gets blood sugar checks and insulin as needed.

By Monday, they no longer had to give him blood pressure medicine, and they were starting to talk about what they could start weaning first. The process of weaning is slow and steady. They adjust a setting, check labs (usually blood gases) and then adjust again if the outcome looks good. It happens over and over again until they’re confident that your body works well without it. They had started weaning him off the Nitric Oxide on Sunday night into Monday, and his body handled it really well. So they shut it off on Monday and started working on weaning him off ECMO next. His oxygen levels ended up dropping so they turned the NO and ECMO back on to let his body rest a bit more.

Everyone on the care team has told us to expect setbacks. They said they’d be more surprised if he didn’t have any setbacks than if he did. So when they had to step back and turn the NO and ECMO back on, it was a little discouraging, but he was doing so well that if this was all we had to worry about, I’d take it.

On Tuesday, his sedation had been decreased a bit, which was irritating for him. He was still on the ventilator and they added an NG feeding tube this day as well. He hadn’t eaten since Friday, and if he was going to be on the ventilator much longer, they were going to have to start giving him some nutrition via the feeding tube. His hands were tied for safety reasons, and he was trying to make letters with his hands to tell us something. Unfortunately, the letters didn’t look like any letters that we were calling out. The medication decreases your coordination, so it’s possible he thought he was giving us a completely different shape. At one point, we’d guessed so many incorrect letters for this ‘Alphabet Charades’ game that I was starting to get concerned about the length of this word. This day was hard because he was more alert so he gagged and coughed more from the tubes, which set an alarm off on the ventilator. It looked really uncomfortable and was made worse by the wrist restraints. There were several times that he just looked miserable.

Wednesday started out with a lot of potential! Danny’s doctors had approved pulling him off the ventilator. This. Was. Rough. He had to sit awake with the machine off but the tubes still in place for an hour to see how his body handled breathing on its own. By the time I got to the hospital that morning they had already started the test. We stood around him for support while he laboriously breathed through his new lungs on his own for the first time in 3 days.

Luckily, he doesn’t remember that experience. He doesn’t remember much of anything prior to Wednesday night/Thursday morning. You’ll hear this a lot, “This first part is hard on you. His hard part comes in recovery”, and that’s so true. Knowing it actually makes it easier in the moment. I was able to find a little bit of peace in knowing that he wouldn’t remember these things that were making me cringe.

The first thing I remember him saying after they’d extubated him was to his nurse, “Sorry if I came off like a dick earlier. I know you were trying to help”, and that couldn’t have been a more Danny thing to say. Very shortly after they had him stand up and move to a chair. Getting up and moving is huge. They want your blood pumping and your lungs moving!

There was a pivotal moment on this day that shifted the course of the rest of this day and the next. Danny knows that pain meds make him feel crappy, so he turned them down. In the moment, we were all very bug-eyed and worried because he knew he’d regret that, and he did pretty quickly. His labs showed he had a low platelet count so they couldn’t set him up with an epidural yet, and when his original pain meds wore off, he was left to catch up on his pain maintenance with oral meds and a PCA pump, which is an IV infusion that allowed him to give himself a dose of pain meds with a push of a button every 10 minutes.

When they took the ventilator out, his NG must have gotten dislodged, because they had to replace it later that day, which was nothing short of horrendous. I had left the room before they started the procedure, and I came back 30-45 minutes later to them still trying to get it in place. He motioned for me to come into the room, and I stood there holding his tight-gripped hand while he gagged, coughed, and sent expletives through clenched teeth in the general direction of the poor guy trying to place it for him.

The cocktail of pain meds and steroids was a real doozy by the afternoon. He was starting to get very anxious and paranoid, and it was controlling him. When he went back for surgery, he knew they’d be trying to wake him up on Monday. And when he realized it was Wednesday, he felt like something had to have gone wrong. He was tired but afraid to go to sleep because he felt responsible for his pain control every 10 minutes. He was afraid that the PCA would malfunction, and he’d overdose. He started hallucinating and seeing things that weren’t there, but he was also very aware of what was happening. He knew things weren’t right, but he wasn’t in control regardless. That night, the only way he fell asleep was if I was touching him. He woke me up several times looking for reassurance that he was okay. He also had a wonderful care team that reassured him everything he was feeling was normal, and he just had to ride it out.

Thursday was his first full day off the ventilator AND his first day walking around the unit. Unfortunately, he was an emotionless zombie all day. He knew he was a zombie, but he couldn’t control it, and the only reason it was entertaining was because we’d been reassured over and over again that it was temporary. His facial expressions were either blank or worry. That’s it. I threw some pretty good jokes at him, and he couldn’t even muster a sympathy smile. Then the evening came, and the entertainment ended…

10:30 PM – we finally fall asleep

12 AM – Danny wakes me up because his mind is racing. He forgot to put away his gun at home before we left for the hospital. I assured him his mom had taken care of it when she was at our house earlier that week.

2 AM – Danny wakes me up. He’s convinced that something is going on at our house and someone is going to hurt our family members. I reassured him I would know if someone was at our house.

3 AM – Danny wakes me up asking me to google our home address to see if it’s showing up in the news. I oblige, and we find nothing going on at our house. The nurse reassures him he’s safe and she’s keeping an eye on the news.

4 AM – Danny wakes up to poop, which is the only happy news in this sequence.

5 AM – Danny wakes up with heartburn, but he’s also very curious about the news and if anything has popped up about our house or family members yet.

Then at 6 AM, they came in to move him from his bed to his chair to start the day.

To say I was less than enthused is the understatement of the century. And you know what the kicker is? Throughout the entire night, he accused me and his nurse of lying to him to protect him. I’d been pretty level-headed through this entire night. It was hard, and I knew it was temporary and med infused, but sleep-deprived Stefani did not approve of this game. It took everything inside my soul not to tell him, “If you don’t believe that I’m going to tell you the truth, then STOP WAKING ME UP EVERY HOUR.”

I didn’t though. It wasn’t going to help the situation. He needed me to be the most patient I’ve probably ever been. The reality of the situation was that he was recovering from an 8 hour surgery, he had been sedated for 3 days, he was being loaded up with 3 different anti-rejection medications including a high dose of steroids, he hadn’t eaten since Friday, he hadn’t pooped since Saturday, and he wasn’t getting restful sleep. Anyone’s mind would have turned on them. The odds were stacked against him, you know?

Luckily, things had leveled out by Friday. Danny had gotten an epidural for pain control by now, and his paranoia and anxiety was subsiding. He was starting to level out and be more normal. His epidural only blocks pain at the chest level, so it doesn’t affect his legs, and I think the walks outside of his room were helping a lot.

Everyone has been reminding me to take care of myself, and I felt like I was doing a pretty good job until I slipped up and didn’t drink enough water for a couple of days. That lead to an unfortunate morning migraine and left me hypervigilant on water consumption now. Eating isn’t an issue. I love food too much to miss a meal. Getting sleep has been challenging, but I know how intolerable I am to be around when I’m overly tired, so I’m okay with stepping away to get some rest. And Danny knows me well enough to know that he’s much better off without me than with a tired, hungry me. So for anyone worried, I’m really okay. And don’t accuse me of lying. I’ve had enough of that this week (see above).

Anyway… we made it. We made it an entire week. Danny is free of his ECMO, Nitric Oxide, ventilator, catheter, OG and NG tubes, arterial line, and central line. He has one IV in his hand and 4 chest tubes that will come out soon. Things are going in the right direction.