A Needed Good Day

It was a much-needed good night. Probably the most restful for her Amanda, but not so much for me! The CRRT machine beeps loudly when it needs to be changed. The nurse had another shadowing her, so they were talking, and the bathroom door was often left open, with lights shining. All not letting me sleep past 4 in the morning. I can sleep well even in difficult times; I don’t have problems with anxiety or anything that keeps me awake. However, I won’t get in bed until I know I’m ready to go to sleep. I’m not the toss-and-turn count sheep kind. I’ve been blessed to sleep like a rock most of the time, except with he aforementioned hospital distractions! 

The dialysis is maxed out for what they are allowing to be taken off. It’s not taking much BP medication to maintain what they are pulling off, either. I suspect they will up the limits today. Her breathing is much less labored and looks more normal. She seems way comfortable now; responsive when woken up, follows commands, and gets mad when moved. I think the fentanyl was the key; for now, I hope they keep her on it. I think she could use some restless days and nights, and easy breathing.

I listened to a devotion this morning on a new app. It was in Psalms 73 written by Asaph, who was essentially a worship leader. Asaph seemed to hit a wall as he tried to understand things, and it troubled him. Early on, I struggled to understand all of what we were going through. It was hard for me to grasp. Now, as I’ve seen God move, recounting his faithfulness, I see things differently. As my mother always said, hindsight is 20/20. I’m very structured, a spreadsheet guy. When I plan an event, it’s down to the tiniest details. I’m very specific and logistical, thinking from all angles. I’m sure many of you have seen that in my writing, the apartment searching, for instance. There is a turning point in Asaph’s thinking, not a resolution but an encounter. There was a line in the devotional that read, “Sometimes, that’s what the soul needs most. Not a spreadsheet of solutions, but a sanctuary. A moment of sacred presence where we stop striving to understand and start allowing ourselves to be held.” Though I’ve gotten good at not trying to figure out the situation, I needed that reminder.

I’ve learned a lot under YJ’s guidance and leadership. He’s not a spreadsheet guy at all; he’s a fly-by-the-seat-of-your-pants, see what God is going to kind of guy. It drove me crazy at first working with him on events, especially mission trips. I like the structure of a schedule. What I learned is that both YJ and God don’t care about your schedule! God works in the moment; just go with the flow. If you just let go and follow God, even down the rough roads, it relieves anxiety. At least it does for me, if I just stay away from the spreadsheet of why. I feel a sermon in here, but I’ll spare you!

Amanda was a little irritated this morning and was biting down on her breathing tube. A nurse from the other day, one I didn’t like, who was very overbearing, came in. She was that way with our nurse and tried to take over the situation. Amanda wasn’t about to listen to her; she was the one who wouldn’t give any pain meds! They were trying to get her to listen and open her mouth to insert a bite block. I didn’t blame Amanda, I wouldn’t have listened to the shrilled-voiced overbearing nurse either. I had no intention of talking with her, so I waited till she left, then got up to help our nurse. I really like this nurse; she is sweet and soft-spoken, asking Amanda to do things rather than telling her. I tried a bit, and she’d barely open her mouth. By the time the nurse had given up and put the bite block up, I was able to get Amanda to open up her mouth. Then the nurse ran over to get the block in.

Rounds were chill today, as she was doing so much better and responding well to the CRRT. Some of the cultures did come back in the middle of the night; she has a pseudomonas infection in her lungs, phenomena. There was heavy talk about the tracheotomy now, especially with the infection. They feel she will need extra support. She has to be sedated with the tube in, with it out and a trach in place, she’d be off so much sedation and be able to do rehab. I just hope we can get a good pain med schedule in place. She is so much more comfortable now. Still alert, I just yawned lowly and woke her up. She opened her eyes big and was communicating that she wanted the sheet off her. I told her what day it was and that Nathan and Kim were coming. I want to keep her grounded when she’s alert, in hopes we don’t have to deal with the ICU delirium again.

I was wondering about all the craziness yesterday, and thinking. Many of the issues could have been a result of high blood sugar. The highest I heard was around 430. Amanda is extremely sensitive to many things, which may have contributed more than they realized. They did give a couple of boluses of antiarrhythmic, and a drip started after the high rate yesterday. They backed the pacemaker off during that time, and her rate steadily decreased. She’s currently in the high 70s with it off I was surprised to see it so low and thought they kept her paced around 100, but they haven’t yet.

The CRRT machine costs more than my house. Amanda’s blood enters the machine, and it functions like the kidneys. Every hour, the nurse has to calculate how much of each fluid is running, with anywhere from 6 to 10 IV bags going at once. That’s all added up, the output she’s making taken off, and all plugged into the machine. Then they put how much needs to come off, more than what goes in. Her setting is currently 200ml per hour, the maximum they’ve allowed for her. So, 200ml is coming off every hour over what goes in.

We started to have nurses pop in just to say hi. One stopped this morning while I was lying in bed. I sat up and put my glasses on to see who it was. She greeted my crazy bed head and groggy face with a Hi, Barkley, saying she’d be back to see us later. She just came back by and I talked with her for a bit.

The biopsy seemed to be a continuing issue. They didn’t have a time scheduled for it, so I was iffy on it happening. The cath lab nurse came on. I recognized her from Amanda’s first cat here. She said they were out of femoral catheters to use and were worried about gaining access with all the medications running through her line. It seemed they were left with only access via the femoral in the leg. The cath nurse left but returned soon. They had a cardiologist who was fine with using an existing line, and the team was ok with her coming off some medications as long as they changed her central venous catheter (CVC). That gave the cath lab the access they needed, and got the CVC changed, which are swapped out every two weeks anyway. The cath nurse said, ‘I like the music you always have playing; it’s so uplifting.’ I mentioned that Amanda was a worship leader. When she left, she sweetly told Amanda that she’d come worship with her when she got out of here. 

The day nurse is very attentive to Amanda, and I like her a lot. We’ve been talking, and she sings along with our music, too. She was looking for someone to help turn Amanda, so I jumped in to assist; it wouldn’t be the first time. She also pulled the Foley catheter for urine. I was surprised by that, but Amanda doesn’t have much output with the CRRT running 24/7 now. The nurse explained it’s better for it to come out and will be more comfortable. They’ll just do bladder scans each shift to check if she has too much, then they can do a straight cath if needed. The nurse also said that on the CRRT, most patients don’t need that, though.

The biopsy was on the schedule for later in the afternoon. Timing-wise, it will work out well. Nathan and Kim will arrive, and we can either unload at the apartment or just park the truck and trailer at Bev’s, since they are away. Even parking at the apartment for overnight guests has to be paid for; it’s just dumb. Amanda will be gone for a while for the cath. I can check on her before we head out to the show on Music Row, too. I was telling the nurse the bartender was playing and how I had friends coming in and we’d planned to go. She said that’s good, she sees so many not leave and feels it’s good for the family to get out and do something. On short stents, I won’t hardly leave, but it’s needed to get out for a while on a prolonged stay. I need a break, and it worked out to be the perfect timing since she is comfortable now, will be gone for the biopsy, and then even more comfortable and sedated after the biopsy.

I was hoping to discuss the trach with the ICU attending. She said she’d circle back and talk further with me, but I haven’t seen her yet. I just want all the details before I make the decision. I’ll have to sign the consent, so either way, I’ll get my talk. With the cardiologist saying there could be vocal cord damage with a prolonged time on a ventilator. I feel it’s a damned if you do damned if you don’t scenario. They were planning on letting her ride, and if a 4th intubation was then trach her, not sure if the infection changed that or what. I need more information; I want a spreadsheet! I’m posting this one early because, with the trailer unloading and the show, I’ll be busy.

The ICU doc just came by, and we had the trach talk. This doc was hesitant at first, a couple of days ago, so she was a good one to question. She laid out her case and explained it much better for recovery, less sedation, improved communication, and actually less risk of vocal cord damage than the tube over an extended period of time. It’s not permanent and ideally will come out before we leave the hospital. I decided it’s best, and they’ll do it sooner rather than later, likely in the next couple of days. I feel comfortable with the decision. We also talked about pain management and how much better Amanda is breathing today. She’s the one who ordered the fentanyl yesterday and said they have other drugs they can use and wants to keep Amanda looking as comfortable as possible. I knew I liked her!

She’s the one I wasn’t sure about, but I feel I earned a little respect from her after about the tenth day on rounds. A Texas girl who worked at the Texas Heart Institute, our old hospital in Houston. We talked a bit about how she was in Houston, then left and lived in Austin for a while before relocating here not long ago. She knew Dr. Nair and Dr. Bogaev, whom we followed to Houston before Dr. Nair. Excited, we knew the same doctors she spoke highly of, Dr. Nair, who she said would be a great doctor to go back to.