PLEX and Prayers

Amanda ended up being pretty zonked after they changed her pain med regimen. I hate seeing her like that, but it’s better than writhing in pain. Once she was settled and out, and they started the PLEX, I slipped out during shift change when it’s always busy. In the ICU with only 1-2 patients per nurse, they are close by to assist Amanda if needed; quite the opposite on the floor. I went to Hopdoddy, the burger joint I’d planned to go to the night before. The singer/songwriter I’d met at the open mic night was bartending, so I sat there and chatted with him while he wasn’t busy. It was a nice distraction and good to see a familiar face, even if it was someone I had just met. The burger was good, and the beer was cold – a welcome break from the hospital. 

When I returned from dinner, I was pleasantly surprised to see my recliner back. I could have kissed that night nurse right in the mouth if Amanda wouldn’t killed me! She said it wasn’t all her; the day nurse told her we have to find him one. I sent a text update to my close update/prayer request list. Nothing but a picture of the chair. As one friend put it, ‘Even the little minuscule things. Our God is an Awesome God!!!’ Amen to that, brother!

After my recliner excitement died down, I noticed Amanda was puffy. Badly retaining fluid all over. The PLEX was still going and was likely playing a big part. They give back about half as much as what they remove. It was a sight with all the 12 IV pumps, the monitor wires, the pacemaker, the ventilator, and the giant dialysis machine. Not for the faint of heart to watch. As I sat and watched Amanda, I noticed her mouth and nose twitching around the vent tube. She looked like a cute little rabbit! I saw a reminder on Facebook, it was a picture of God’s plan versus our own. Our was a straight line, and His was up and down with hills and valleys, and water to cross through. I really felt that with everything since we got her to Vanderbilt. I think it shows how there can be multiple “41” moments on the way to the big one; this morning was a “41.”

I was waiting for night rounds before going to bed, but they were taking a while. It was well after 10 by the time they came by. Not much new, but the ICU doctor rounding was the one who placed the vent. We hadn’t spoken after it, so he gave me the first-hand rundown of what they did during the intubation and bronchoscopy. Amanda had a forehead pulse ox from when they were arguing about her nails and oxygen saturation levels yesterday. She wasn’t getting good readings, so the nurse swapped it back to the finger. It showed a better reading when she did. I asked her to remove the forehead one since Amanda always has issues with any kind of adhesive. I didn’t want her to get a scar on her forehead. They bathed her and swapped out her bottom and defibrillator pads on either side of her back. The defib pads had pulled skin off, as she was always sensitive to these types of things. The care partner commented on how beautiful Amanda’s skin was, though, and how she wished she had her skin. I crawled into bed as it got close to midnight. I have the same pullout chair/bed as I had in the other room, so I got my air topper and pumped it up, and made my bed with my own pillow and blanket.

I realized quickly that I wasn’t going to be sleeping past shift change, so I just got up when they came in. I found a really good Honey Oatmilk Latte to wake me up from a place we’d planned to try in the other building we were in before surgery. After I was up and coffee in hand, the cardiologist came by to do her assessment prior to rounds. All good news. Amanda seemed to be improving; it looked like the PLEX and prayers had helped tremendously. The “rub” they heard is almost gone, and she could hear her heart beating clearly. Her rhythm without the pacemaker is in the high 80s to 90s. It was no longer junctional and had returned to a normal sinus rhythm, and looked great. I asked about “rub” and the pericardium to clarify, and the doctor asked, ‘Are you in medicine, you know terms and I don’t have to explain things? ‘ I replied No, just Amanda medicine! The plan was to complete two more rounds of PLEX, followed by two rounds of IVIG. This is similar to the treatment plan she had back in December. The biopsy will be next week, she confirmed.

The ICU doc was the next to come by. He wanted to leave the vent another day. With Amanda comfortable and mostly out, I feel better about this course of treatment. They obviously took it out a little too quickly, but he said it’s common to be reintubated after a transplant sometimes. He wanted to perform a bronchoscopy today to examine her lungs and see if they needed to do anything. They upped her Bumex, swapping to a drip and added another Lasix-type diuretic. He also said we were ‘Scraping the treetops’ with her kidneys. If her output didn’t pick up, they may have to do dialysis, but for now, we wait and see.

The PA came by next. She wanted to check a few things. The cardiologist had already adjusted the pacemaker to its lowest setting to see the native rhythm, but she wanted to see for herself. There was PA training, so she showed her how to adjust the temporary pacer. They couldn’t get the selection the way they wanted, so she simply unplugged the wire from the box. That was one way to see her natural rhythm! They were looking for a P wave, the little wave before the big spike on an EKG. This is what initiates the heartbeat in the atrium. I was telling them how Amanda’s native heart didn’t have one from all of her ablations, and it was odd to see one on her EKG. We spoke about her pain management. I said I think we could ease back or swap to the other oral med, but I was hesitant about saying that. She knew where I was going and said we could dial back on the current PO med once they plan to extubate, if needed.

The new nurse is a sweetheart; she was in the room, solidly attending to things for a few hours after the shift change. Amanda’s new neckline was oozing a bit and had gotten blood in her hair. The nurse got a shampoo shower cap and warmed it up to “wash” Amanda’s hair to get it out. It’s like a baby wipe shower cap combo. Her hair was tangled and starting to mat. The nurse was going to brush her hair, and asked if I had a brush. I had Amanda’s toiletry bag already here, so I grabbed her brush for the nurse to use. I helped get Amanda’s head up and around while she tried to get the blood out.

It was good to be around for the prerounds. I could converse better with each team one-on-one versus all at once. As I mentioned yesterday, all the teams at once were overwhelming. With prerounds, I was able to ask questions and get specifics individually, without feeling intimidated by the large team. I kicked myself for not staying the last two nights so that I wouldn’t have missed the prerounds, but I needed the uninterrupted sleep, too. The one presenting during rounds seemed super nervous and wasn’t very good at presenting; she looked more intimidated than I did! By the time they rounded, Amanda’s output was good, and they upped the diuretic game, so we kicked the dialysis can down the road a bit.

After rounds, and I wasn’t needed, I went to the “storage unit” parked in the garage to get a few things. I wanted the Firestick to play a little music, but I forgot it was in the storage room back on floor at 7 East. I asked the receptionist, who is very rude and power-hungry, if I could enter the storage room to get something from there. She was perturbed with my request and asked what I had in there; I told her “A whole lot!” She said I couldn’t go in, and she had to bring it out. I said, well, it’s in a drawer in a dresser, so I don’t know how that will work. She opened the door, and I just walked in and got what I needed. Then turned around and walked off; I did say thank you, but mumbled a whole lot more under my breath! As I was leaving, Dr. McChicken saw me saying, ‘She’s not back here yet, is she?’ I explained that I had stuff stored and needed to grab something. He wanted to know how she was. I told him of the downturn and the better news from today; he and the rest of the team were pleased to hear it.

They needed to administer liquid feeding since it’s been a couple of days, and she’s stayed NPO. The tube she has is an OG tube that goes through her mouth to her stomach and can be used for both feeding and suction. The NG is passed through the nose and has fewer risks, such as aspiration. It goes closer to the small intestine also, and doesn’t handle suction as well. So, Amanda needed an NG tube placed. They upped her sedation a little, but she still didn’t like it much. They put a clip on first that the tube is secured to it. The clip goes in both nostrils and clips around together, back in the sinus area. Insert cringe, yeah, I think I’d not like that either! She needed help to get it placed, and then gave Amanda a break before placing the tube itself. They confirmed placement with an X-ray. As the tech came in, I put my recliner down with one big push, got myself back against the wall. He said ‘You look like you know the drill!’