A Rough Day

Sunday night, after I expressed my concern, the nurse called the NP to come back to talk with us. I had asked Amanda her pain level on a scale of 1-10, and she told me 7. This was after the muscle relaxer had had plenty of time to take effect. She looked miserable, and every breath looked agonizing. I’ve never seen her breathing this labored; no deep breaths are even possible. When the NP came in, she asked her what her pain was. She told her 2, I was so confused. I knew the NP and nurse’s demeanor, we’d already butted heads. They were fake nice, putting on a face; I’m pretty sure neither liked me or my attitude, and the feeling was mutual! If I’d have said her pain is higher, they would have treated me as if I were overbearing and domineering. So, with Amanda oddly giving her a two for her pain instead of her real pain, my hands were tied with this nurse and NP.

I was so confused; I asked Amanda why she had said 2, and moments prior, she had told me 7. She was confused about things and thought she had pain medication in a couple of hours, so she was holding off. Later, she said she didn’t understand what he was asking. I was frustrated; I couldn’t fight for her if our stories weren’t the same. She was and still seems very confused. This behavior and confusion are typically closer to being extubated, while the sedation is wearing off and is covered by pain meds. So I think it’s typically masked a bit, and it’s just more noticeable now. She hasn’t been making sense and using incorrect words; it’s a little scary. 

The night was horrible; she cried out in agony so many times, hollering, ‘Help!’ I have been through this many times before; it’s rough. I’ve become somewhat desensitized to it. I just have to sit back and pray when there is literally nothing I can do. She was in so much pain that she was anxious. All throughout the night, she would cry out in pain and cry out for me, worried I was gone. I was startled from sleeping around 4 when she cried out and got up to check on her. She was hollering for me, and when I went to her, she said, “They won’t help me!” She wanted pain medication, and she wanted some water. I went to get some ice chips, but was met by the nurse, I’d forgotten she was NPO. A few ice chips aren’t going to hurt anything. The nurse was a 100 percenter; she wasn’t going to budge. One time, Amanda had a venti Starbucks and then went right back for a cath without issues, and they knew and told us it wasn’t a big deal. It was just a terrible night.

By morning, without any sleep, they finally got her some pain medicine. It was oral, and the same amount she took at home. Still without the other pain med she typically takes. They were alternating a muscle relaxer, but we weren’t even on par with the previous pain med regimen. I think she’s in a little more pain now than before surgery! It’s understandable that with a high tolerance, they can’t remove the pain. We knew that going in, but I never imagined they wouldn’t be giving her IV pain meds after surgery!

The prerounds only included the fellow, not the new cardiologist. The cath lab NP came by to get consent and do an assessment. I quickly told her about Amandas left leg stent, from a fistula after the first transplant. Wondering how they would access things, I asked if they could use one for central lines in the neck; the NP wasn’t sure. She left and returned with the cardiologist who was scheduled to perform the biopsy. He was in the room for less than 30 seconds when he said, ‘We’re not doing a biopsy.’ Her labored breathing, which is all in her upper chest, and the pain, she wouldn’t be able to lie flat, and he knew it. It wouldn’t be safe, and with the biopsy just being a want at this point, it wasn’t worth the risk.

During rounds, they were worried about the labored breathing and the output. They wanted another nephrology consult about CRT, continuous dialysis. They were back to being concerned about a gas bubble in her stomach, repeating X-rays in the morning, but I never heard anything back. I think a lot of the breathing has to do with the pain not being under control yet; it’s frustrating. I really didn’t get a chance to ask questions with everybody new, and they just walked off. The only one I knew an ICU doc, who had a creepy smile and stare, came up and asked me one-on-one if I had questions as the team walked off. It surprised me, I thought she didn’t like me. We talked about pain, and she said they were going to consult the pain specialist.

The nephrology (kidney) team came bu, including a doctor, a fellow, and what I assume to be an intern. They looked over things and Amanda’s chart, checked her output, and said the same as yesterday: stay the course. The transplant team had said she was maxed on diuretics with three right now on board, so I asked the doctor if that was it. She said she could add two more things and tweak some things, but there wasn’t a need for the CRT, yet. Later, the intern came by to get consent signed, just in case. I wasn’t having it, I didn’t want to deal with a baby doc who’s learning. It wasn’t the day for me. He came in and said he needed consent, but didn’t explain anything. Placed the consent in front of Amanda, who had her eyes closed in pain, and just looked at her like she was going to produce a pen right out of her butt! I said I’ll have to sign it, and yanked it up and nastily said, “Well, I’ll need a pen!” If I weren’t drained, I would have let him know how poorly he did, but I just didn’t have the energy.

After rounds, they put in an order to add the Optiflo back, which provides a higher flow O2 delivery. RT came quickly and got it set up. She also came back with a breather that had a mask. It added positive flow, which was supplied to help supply additional air, open vessels, and break up mucus. This was scheduled for 3 times a day. Amanda didn’t like the mask, but they had a mouthpiece they could try the next time. They had planned on getting her up and walking, but with the labored breathing, they decided to cancel that idea. They didn’t want her to overexert herself, with each breath being so hard.

The cardiologist came in while I was explaining to OT that she wasn’t as out of it as she appeared to be. I told her it’s not that she’s sleepy or that she doesn’t understand; it takes her a while to answer, even with just one word. It hurts so bad, and she has such a hard time breathing; she can’t speak. Amanda had her eyes closed while I said that, and she shook her head yes when I finished. The OT asked if what I said was right, and she shook her head again. Since they weren’t going to get her up, they asked if there was anything they could do for her and listed a few things. She didn’t respond, but I asked Do you want your hair brushed? She nodded yes. The OT asked, “Do you want me to wash your hair?” She nodded again. The cardiologist didn’t shed much light on anything. He did mention how we need to get more fluid off.

They added another “mab” style treatment for preemptive rejection. The whole rejection thing is scary. She has a crazy rhythm, she’s retaining fluid, I just wonder if we went from one heart rejection to another. I don’t have it in me to think about that right now; it’s just one day at a time. Huge prayers were not in rejection again, and it’s all just a precaution.  

The PA with pain management came by. I tried my best to explain things. I told her the story about OT and how she was alert with her eyes closed. She said that it would help to have my experience with her and know she is actually in pain. We went over her history and previous history, covering a lot. She left, saying that she would talk with her team and make recommendations, but it was up to the transplant team to make the final call. Later on, the NP came by and said she tweaked the pain team’s recs, but changed things up with oral pain meds, the muscle relaxer, and IV pain meds. Answered prayer right there.

The next big battle that has been one of the hardest is ICU delirium. I had never seen Amanda in the state she was in today, but only once before. The horrible breathing has really been hard on me. I’ve only seen it twice before in humans: my mother and father in the last days of their lives. Shallow but deep upper chest breathing. As I hear her breathing now through a machine, I am reminded of that. I don’t think we are there, but with each breath, it serves as a constant reminder of those days. That has been tremendously hard for me to deal with. I know God has a purpose in all of this, but the thought of the end of life, combined with Amanda, is unbearable for me. The delirium I noticed last night in the aforementioned story change. It became more pronounced today. She was using the wrong words for things, changing stories again, and just not being right. The nurse had a term for it, I don’t remember, slim something. It has been the most horrible thing to watch. In an Austin hospital, one night, Amanda had a high fever of nearly 106 and was delirious. She was at a toilet, vomiting in pain, and was screaming at me to get her a taco! I said taco, and she screamed Yes! She wanted a towel, but it came out taco every time. We joke about it often now, but it was one of the scariest moments in our young lives. Not long after that trip, we transitioned care to the Cleveland Clinic.

I look forward to the time we can laugh about this, but it seems so far off. God had a plan in all of that, and it was hard to see at the time, but it is easy now. Those times, when I can recall His faithfulness, help me today. He has built my faith through those refining moments. I didn’t see it then as a 20-something young man sleeping in the back of a car in a hospital garage, but now, as I think on those days, I am strengthened. YJ, in his sermons, sometimes has said to make notes in a journal of all the answered prayers. I wish I’d done that years ago, but I can at least recall them from memory now. I hope years down the road, I can look back at these writings and remember how faithful God was to us.

My move-in date with the apartment was last Saturday. I had yet to see anything from the apartment complex on the actual lease, and what else was needed. I had probably called twenty times and left numerous voicemails and texts. My biggest concern there was that there was an income restriction; you had to make a certain amount to live there. I was by our good, but with recent low pay slips, I had concerns. Our friends, with trailers still loaded, from weeks ago have been at the ready and will be coming up this Wednesday. I wasn’t planning on staying at the apartment just yet, but I needed it when they go there on Thursday. 

I was mad with the pain regimen, the delirium, and everything. I needed a break so I took off to the apartment to settle things in person and I was pissed. To be 100% honest, I set out to chew someone’s ass about it; I figured that would make me feel better. It was going to be bad, too; they were going to get it with my pent-up anger. I arrived at the apartment complex, and I felt the need to pray the moment I turned the Yukon off, as if an urging from the Holy Spirit had prompted me. As I stepped out, I simply prayed, “Lord, let me be Christ-like even though I am so mad.” 

I walk in mad, still, ready for a fight still, storming the gates if you will. If it had been an old western bar, I’d have slung the doors open, with them swinging behind me. There was someone in the office, and the lady asked me to wait. As I sat down, a calm came over me. I was mad, yet calm, I think my size carries an air about it anyway. So, my size, face, and whatnot set the tune. I was polite and didn’t fire on the lady. I stood towering over her as she typed away on her computer. I finally sat and waited patiently, surprisingly. I conveyed my disdain for the situation, but in a calm way. I was proud of myself. Only the Lord could have held back what I had brewing. A nice lady, but she had an air about herself too, with a South Eastern European accent, maybe; I got a gypsy vibe from her. If I had gone in guns blazing, it would have gone differently. She said she was sorry and needed to make a phone call to express her feelings about the situation, but she didn’t want me to hear. It seemed like she was about to unleash on someone; oddly, I felt vindicated. After a while, I returned to the office and we got things settled. She was apologetic and fixed things. I left with an apology and a promise that she would work on a credit to our account. The whole ordeal unfolded quite differently than I had envisioned. The lady even commented on how I was so calm and was positive in such a bad situation. After I told her about Amanda, she felt terrible and was even more surprised I hadn’t been rude. “You and me both, sister,” I thought! That was only the Lord because He knows I set out to make an ass of myself!

I had read about ICU delirium, and a website of the same name was actually affiliated with Vanderbilt. It said that patients seem to disassociate themselves. I asked my close prayer team to send me selfies to show her. That was like pulling teeth! I don’t look good, or this or that, I even got a selfie of one in a what looked to be a ball gown obviously not a current one! My girl looked rough, it didn’t matter what their selfies looked like, I just wanted a quick selfie to show her, the quality didn’t matter. Maybe they were worried I’d post them here! I was talking to Brittany, Amanda’s bestie, when I came in. I told her what I was doing. When I walked in, I put my earbud in Amanda’s ear, and Britt talked to her for a second. She was shaking her head as Britt talked. When she said I want to come see you Amanda let out a weak “Yeah.” After that, I showed her the selfies I received and tried to get her back grounded. 

Amanda was out and barely knew I was back. We had a night nurse come in that I knew and really liked. The ICU doc came by, like this one, and I mentioned the delirium. He said it was all too common. I told the nurse how I had been showing Amanda pictures and talking with her. Asking what else I should do, she reassured me that I was doing everything right. I had been thinking about going out just for a break after the apartment stress and the roughness of being around Amanda, who was slipping into delirium. I needed a break from the hospital room badly. I took it as a sign that we had a nurse whom I knew would take great care of Amanda that I should take that break. The nurse had given Amanda some IV pain meds, part of what the pain team had put in. She wasn’t out of it, but actually asleep, finally. I took that as my green light to step out.  

It was open mic night at the hotel I stayed at, so I went there, and I knew I’d see a familiar face there. I stood at the bar, grabbed a drink, and while waiting, I got a shout-out from the mic when they saw me. I took my drink and sat on a couch. As last time, I was one of the few who actually paid attention. They have a cool vibe, and even though they only met and started singing together a couple of months ago, I think they make a great duet. They sing a lot of the music I like, Americana/indie vibe. I listened and sang along, and if but for a minute, had a little peace from a rough day. They laughed and joked, and I picked on them as I could. They are fresh out of college, and I’m the old man to them for sure. On a break from singing, the bartender, Brett, asked about Amanda by name and how things were going. We chatted for a bit. The week before, he was ready to go back home, but the past week had some God appointments, and he planned to stay and keep pursuing his dream. I spoke on how God had been great to us and had lined up so much for us. There was a power outage at the hotel, and I called to check on Amanda. They had started the BiPAP, similar to CPAP, that they’d put her on before to help with breathing. She was out but would wake when aroused. I felt fine staying out for a few more in the dark acoustic songs, then planned to head back.

I was going to grab a slice at a pizza place on the way back, but it was closed. So I settled for some cafeteria pizza on the way to the room. I sat outside and ate my two slices, then went to the room. Amanda seemed peaceful and was sleeping, so I left her be. I fixed my bed and promptly hopped in it for an early turn-in. The NP and ICU attending came in and started talking bedside, but it didn’t seem good as they spoke of blood gas and CO2 levels. I had my Mac out on my lap and in bed. They both came to my bedside and explained things. Amanda’s lungs hadn’t recovered as expected on the BiPAP. Her CO2 levels were high, and if they didn’t come down, they’d have to intubate her again, for a third time. I sat and thought, then put my Mac aside and started praying and fell asleep.