Through the Ups and Downs

All good news in this post! (Well, I got ahead of myself when I wrote that earlier today. Read on to see why I’m going to end up being fully grey when I return to Texas! All in all, we are improving.) Yesterday, as soon as they took Amanda back for the biopsy, I took off. I headed to Hopdoddy, which is quickly becoming my spot. I like that it is rarely crazy busy, and I’m getting to know the staff, so that makes it feel a little normal in a foreign town. Brett, the bartender I know from the open mic (I like him, so it was time to name drop!), was finishing his shift and heading to his other bartending gig at a brewery on Music Row. I didn’t get to talk to him much, but I told him I was bringing friends to see him at his gig tonight. He’s a hustler, from one job to another, then walking straight to his gig that started at 10 pm. I had some nacho fries for a lunch snack as I waited for Nathan and Kim to arrive. They were going to go to the hotel first, then head to the apartment.

I took off a little before I heard from them. I needed to unload a few things from the Yukon to make it less of a storage unit. Kim stayed at the hotel to rest, and Nathan showed up at the apartment not too long after I got there. I’d saved a parking spot to back the trailer right where it was a straight shot to the apartment. We had a few stairs to contend with, but it was an easy unload. Seventeen hours of driving for 30 minutes of unloading, we’ve had some great friends. After unloading, we headed to Beverly’s, about 10 minutes away, to drop the trailer off. Then we both headed back, Nathan to the hotel, and I headed to the hospital to check on Amanda.

I was surprised when I walked into the room and saw Amanda’s eyes open to the sound of my voice. She was much more alert than I’d anticipated seeing her. I talked with her a bit and told her we got our stuff moved in and made sure she was okay with me leaving to have dinner with Nathan and Kim. I got the approval, and she was sleeping by the time I left, about an hour after that. We took off to Music Row later in the evening, around 8:30, and it was within a mile. I figured it was easier to eat down there rather than make multiple stops. Once there, we saw that the bar Brett was playing at had only tall tables. Kim, being in her wheelchair, couldn’t eat there, so we found another spot. The area wasn’t as busy as I thought it would be, and the place we ate at was pretty dead, only one other table besides us.

After we ate, we walked just a few doors down to the Live Oak to see Brett. It wasn’t that packed either; it was singer-songwriter night. They had two stages, one upstairs and one down. I’d called earlier in the day and asked about accessibility; they told me it was easy enough to get around, but the elevator was broken. Luckily, the show we were there for was downstairs. When we walked in, one of the guys from Hopdoddy, the goofy one, and the first open mic saw me and hollered out, ‘The Legend!’ I have no idea why he calls me that, he’s goofy like I said! I ended up knowing a good many who were there. Jordan, who also sings at the open mic, showed up to watch and sat with us. It was a good show, three singer-songwriters, one singing one song at a time. It never was too busy, and Brett had a pretty good support show up, including his parents, who flew in from Pennsylvania to surprise him. It was sweet and good to meet them. He had mentioned Amanda and her transplant to his parents, so they wanted to know how things were going. The crowd even got a little Jesus sprinkle on them as one of the other singers shared a testimony and sang Ain’t No Grave at the end. It was a good night; a needed break with some of our closest friends. 

This morning was good. Getting in late, I slept through shift change, and when I heard an ICU doc, I got up to talk with him. Amanda had been alert and very responsive. So good that they’re going to give her one more shot to come off the vent. She still had the tube but was breathing on her own. Things were looking good. So they began gradually weaning her off support, but the tube was going to come out today. If all goes well with extubation, we would avoid the trach. I felt good about how she was doing. It was a good start to the morning.  

During rounds, they echoed the one more chance and wanted to try and get a little more fluid off. Though the cath showed she wasn’t retaining much fluid around her heart, she was still puffy and had some to give. Her arms are more puffy, and the PA explained that when her body is stressed, blood vessels are leaking fluid into her tissue. Once she calms down, it will release and let the CRRT do its job more effectively. The plan was to start pulling more fluid with the dialysis as the day went on to get this excess fluid off.

After they started backing down, not the vent setting and the sedation and fentanyl, Amanda became anxious and in pain. It’s always a delicate balance to get her awake enough to breathe on her own and not be hurting too much. I was going to go eat with Nathan and Kim, but she was too anxious and told me she didn’t want me to go. Both the nurse and I were tending to Amanda to keep her calm. The nurse today was great, Jackie (you know I like her if I mention her name here!) She’s been advocating with me about pain med adjustments and getting Amanda off the vent. We made a good team today. Amanda was new to the NP, so she was trying to figure things out and was taking it slower than Jackie was happy with; she wanted Amanda off that vent, and so did I! 

With the nurse ready, the numbers looking good, and respiratory on board, it was time to extubate. The PA was still apprehensive. The ICU fellow came by and asked, “Is the order in to extubate?” The nurse explained that PA was holding off; she happened to stop me, and the fellow explained how good Amanda looked from before and said she was ready. Nathan and Kim had arrived and were waiting in the lobby. It was going to be a minute before they’d get the tube out, so I swapped out with them, since only two can be in the room at a time. They stayed till they came to extubate. Kim said Amanda didn’t want to let go of her hand!   

After the tube was out, the respiratory tech started the Optiflow to improve airflow for a bit. Amanda had been so uncomfortable shifting and fidgeting around that she was tired and was out afterwards. Even asleep, she was still breathing well, and her respiratory rate was the lowest I’d seen it, which was a good thing. She still needed to work on deep breaths, but we’ll get there. She did great when lying flat, which surprised me. I think the extra pulling of fluid was helping her breathe better. Her first set of blood gases came back and showed she was a little acidotic, but she wasn’t any worse than before the extubation. She just needs to take deeper breaths, so the RT upped the high-flow O2. 

I was going to sneak out after the nurse got back from her late lunch, but Amanda didn’t want me to leave. She was more hurting than anxious. Later on, she calmed down and said she didn’t want me to go long. The nurse saw me taking off my bag and told me, ‘She’s sleeping on and off, just go, I’ll call you if she wakes up and wants you. So I went ahead and ducked out for a bit. I went to Hopdoddy to get a bite and write a little bit. Brett looked like he’d partied a little too hard after his gig; poor guy, when he went to bed with the sun up, was pulling a double today, too! I remember those self-inflicted rough days from my youth. Now, I sleep wrong and want to call in sick to work! With his parents surprising him, he had a full schedule with work and talked about calling in on Sunday to spend time with them. I encouraged him to do that. What I’d give to have a night with my parents when they were in good health. Sorry, Hopdoddy, but I hope I don’t see Brett there Sunday.

When I got back, I wouldn’t say all hell broke loose, but it wasn’t the best news. On an X-ray, checking her feeding tube, they saw something like air in Amanda’s chest cavity. They had issues reading an echo earlier, which also looked like air. They had a surgeon consult on it, and he said she had a pneumothorax, a collapsed lung with air between the lung and chest wall, and he would need to place a chest tube. I like the ICU doc from Texas who knew Dr. Nair, enough to mention her name, Dr. Mery. When she came in about the pneumothorax, she was sweet and said she didn’t want to come into the room. Saying she thought we just needed a break after everything, and didn’t want to give us the news. I googled her; she’s got her MD from Harvard and an MBA from Stanford, all of her fellowship and residency at THC and Baylor, where our Texas team is. She has grown on me. I thought she was weird at first, but I think she was just feeling me out. She also commented on how she liked my Mandalorian blanket, so she got extra points.

The surgeon came back to get everything all set up, and they ordered some extra pain meds before and after. He started to numb things up with a shot first. I was surprised to see he was going to place it high, about where her old pacemaker scar was. I was in the room for the whole chest tube placement. After everything was all numbed up, he took a wire and pretty much stabbed Amanda in the chest with it, pushing it all the way into her chest cavity. He took a smaller tube and guided it over the wire, I assume sizing it up. After taking that off, he placed what looked to be about 8-10 inches of tubing about as big around as a McDonald’s straw in her chest. Even with tons of lidocaine and two pushes of fentanyl, it still hurt like hell, I thought as I watched Amanda wince in pain. Once hooked up to suction, it poured out a bloodly fluid. There were some bubbles, which meant there was a small hole in her lung. Over time, it will seal back. 

Prior to all of this, the pain team came and started PCA, on-demand, pain pump. Everything else was discontinued, though. They record how many times she pressed the button and how many times it dispensed medicine. It will only give a dose every ten minutes. At shift change, she had pushed it 110 times and only gotten the medication 11 times. So as you can see, she needs it! It is maintaining her pain about a 5 out of 10, coming in with chronic pain a five is acceptable. She is still alert with this level, too. Maybe a little too alert; she’s been pretty demanding about bed adjustments, wanting scratches, and ice chips. I’m never going to finish this post!

She did have a run of tachycardia for about 5 minutes in the 140s. They ordered a bolus of anti-arrhythmia medication and to start the drip again. By the time they got the bag ready, her rate had come down, and they didn’t do a bolus; instead, they just restated the drip. The thinking was that the pull in the dialysis was too high, so they dropped it down to net zero, not taking any extra off. I feel it’s going to take forever to get this fluid off. 

Nathan and Kim came back for a visit in the evening and stayed a while. Amanda was in a much better spot to see them, but was still out a bit. She is able to talk now. I forgot to prep Nathan where the ice chips were before they went in, so the nurse had to fill in. Kim mentioned that the nurse was in the room the whole time. She is kind of annoying, very annoying right now. No matter where I go, she seems to get closer to my feet, walking fast everywhere. She just runs around like a chicken with its head cut off and in a hurry when there is no rush. Maybe she had too many energy drinks before her shift started. Jackie from today has me spoiled, I guess! With her, I really feel like we’re a team, both working together for the best of the patient, as it should be. I’ll be glad when she comes back tomorrow. I’ll be filling out one of the award deals I’ve seen around on her.

I sat and talked with Nathan and Kim for a while in the waiting room when they came out. We plan to get breakfast after rounds in the morning. I’m sad they are leaving and wish I’d been able to hang out with them a little bit longer today. When I returned to the room, Amanda didn’t look good. She was nauseous, and the nurse just wasn’t paying attention to her and seemed not to understand her. I loudly said, “She’s nauseous!” I’m beginning to think she doesn’t understand English! It’s like she can only do one task at a time, too, not a very good multitasker. She was too busy and running around the room like a wierdo again, so I just got in the drawers and grabbed an alcohol pad to get Amanda to smell. That’s a nurse’s trick to help with nausea, and sometimes it works for Amanda. I got a cool cloth and put it on her head, too.

Really hoping Amanda doesn’t get behind on pain, there’s no way she’s getting sleep having to push that button every 10 minutes. I spoke with the NP about it, but she was pretty firm about waiting to get a good baseline. She pretty much said discomfort now to be better managed later. I get it, but I don’t like it. They’ll calculate the meds used and the times she pressed the button to come up with a schedule pain med balance, then something for breakthrough pain. This will be better for the long haul, especially when PT shows back up.