And I forgot...the previous night I had to take the clock off the wall because he was so focused on it. And I laid in bed wondering what on earth was going to happen to my family if Jay had to receive inpatient psychiatric care for the rest of his life.
The liver team said that they weren't going to do a liver biopsy because Jay's last set of labs showed that his WBC and liver enzymes had come back down. They said that they were probably looking at a reaction to medication and that it would resolve itself. I kept myself from saying, "When? Today? Next week? Next year?"
And then his behavior turned even more bizarre than before. He kept counting up and down from four on his fingers. He kept lifting up his right forefinger, holding it out in front of him, and then putting the tip of it in his mouth. He kept holding both hands out in front of him, bringing them together, placing them on his chest, and then holding them back out again.
And I couldn't do anything to stop it. He wouldn't take meds. He wouldn't eat. He wouldn't stop the bizarre movements. At one point he just kept looking to the left and not paying any attention to what was going on around him.
Both of our phones had died in the night, and my mother was going to bring over my computer and my phone charger. By the time I fired up my phone on Tuesday morning, my FB had blown up. I felt terrible for leaving people hanging, but so grateful for the response I had gotten. I sat in a chair in the corner of the room and ugly-cried for a long time. For so long, in fact, that the nurse came over to me told me that it was her job to take care of me as well as Jay, and made me promise to ask for what I needed. I told her that I needed to sit in the corner and cry like a baby and read the prayers and messages that everyone had left for me. With that over, I felt like I could actually function.
It was about that time that the doctor ordered 5mg of Haldol. Haldol is an old-school antipsychotic drug that acts like a sledgehammer. There's really nothing nuanced or fancy about it. It's just an absolute sledgehammer. After Jay got that, he slept for about 5 hours. At leas I thought he was asleep. Later I found out that he was completely aware of everything that was going on around him, but he was simply processing it through the psychosis and it was becoming part of the "dream" that he was having. Every word said, every beep of the monitors, every smell of alcohol, everything he saw ended up on a continuous loop that played over and over in his head and wouldn't stop. He was really locked inside his own mind with no way to get out. What started out as a pleasant dream turned into a nightmare as he realized that there was no way to stop the endless loop of stimuli except to die.
At 11:30 or so, the Chief came by and assured me that this was temporary and that they were going to fix it. He also told Dr. Iqbal that if Jay wasn't taking meds and eating, she would need to use a Dobhoff tube. She came in a little later to position it. Jay was aware of what was happening but never responded.
Meanwhile, my pastor, Dan, dropped off two bags of groceries (these will become important later) and prayed with us. He didn't stay long. I think he knew that I was exhausted and needing to concentrate on Jay. But he did bring me the first food that I had eaten in over 24 hours. That was the best sandwich I'd ever put in my mouth. It was a man sandwich, too, which was awesome. I don't know a lot of who get women get jalapenos and banana papers and spicy whatever sauce on a sandwich, but this sandwich had all of it. It was like he was saying, "Look, tofu and lettuce aren't going to cut it for you. Here's what you need, sister." I loved it because it came from the very depths of Dan's heart and his absolute concern for me. He wanted everything to be better, and somehow that sandwich represented his desire to do his very best on my behalf.
Somewhere in the late afternoon Jay's hepatologist came by. Jay isn't under his care right now because he's under the care of the surgeons, but my mom had stopped Dr. Perri that morning and told him what was wrong. I needed to see him so badly. He and Jay are kindred spirits. Both smart and nerdy. Both young dads with kids that they adore. Both teachers. And I needed Dr. Perri to look at Jay and then look me in the eye and tell me that it could be fixed. He assured me that all would be well and that he would be perfectly fixed up really soon. That may have saved my life. That plus all of the FB prayers and posts and messages and texts.
At some point in the evening Jay decided to stop pretending to sleep to complain about the Dobhoff tube.
"There's @#$% in my nose."
We told him that he had to have it because he wasn't eating and taking his medication, at which point he agreed to eat something. Had Dan not come by with groceries, all we would have had to offer would have been cold chicken fried steak and mashed potatoes. But I went rifling through those grocery bags and found bananas. Beautiful. Jay agreed to eat one and then ignored us again. After that he started to pull the tube out. We stopped him, but he had pulled out a significant amount. So much so that he had to be re-X-rayed to see where the tube was.
Other things he said to me at that point included, "Shut up," "Get out of my face," and "Go away." Strangely, none of them included, "Come hop in the bed with me." That was the first time I really felt like I might get Jay back.
He seemed to understand at that point that the only way things were going to go his way was if he ate and took meds. So he did. Then the nurse came to tell us that the doctor wanted to leave the tube in until the morning so that it would be a backup if he started refusing again. Then the nurse called me into the hallway.
"I have a feeling he can hear me, so I didn't want him to hear this. If he pulls the tube all the way out, the doctor isn't going to put it back in."
"Ah," I said. "Understood."
And it wasn't like I let it happen. I literally turned away for a second, and when I turned back I saw a nasty tube laying on his chest.
More bananas. More cereal bars. Lots of water. And finally the request for me to heat up his dinner and feed it to him.
At that point he actually started resting comfortably. He wasn't all tensed up like he had been. He moved his legs around, turned to the side a little bit, and started snoring. I thought there might be hope after all. Dolly showing up to bring me carrot cake and chocolate cake from J. Alexander's didn't hurt either.