Chapter Thirteen: Baby Steps….
Our new room on the second floor had a nice big window that allowed sunshine to fill Steve’s room each morning. This made all of us happy. The window represented a world beyond the hospital where birds still played in the trees and clouds floated by on a beautiful late spring day. This window brought us hope that a world beyond IV’s, heart monitors, therapists, and hallucinated distortion could exist. It was a look into our future. A future that was still going to take a lot of work to achieve, but it was still a future.
I would sit by this portal of hope each day and play soft music from my laptop to calm Steve. I know how music can change our brains, so I made it a constant part of our day. At night when we would leave, I would ask the nurse to keep the music going. Steve had rough nights. He rarely slept because of the high dose of prednisone which made his confused brain race. I wanted the music we both loved to help soothe the nights. Some nights it did. Some nights it didn’t.
Since Steve’s brain was still very cloudy, the neurologist came to visit and test his brain to see if there had been any damage. Lupus can cause lacerations on the brain and we were beginning to wonder if this had happened. Steve wasn’t making much sense when he whispered to us. We had a lot of frustrating conversations as Steve tried desperately to convey his feelings through a scrambled brain and a very sore throat. I was becoming afraid that his brilliant brain would never be the same again. I know he had the same fear because he would begin most of his sentences to the doctors with, “Before, when I was smart…” Steve has always been proud of his intellect and I could tell he was as bothered by this new condition as the rest of us were.
The tests came back negative for any brain lesions and it was determined by the neurologist that Steve’s brain activity looked normal. After interviewing me, she felt it was the extreme use of drugs during his very critical phase and the ICU psychosis. With time, his brain would clear and he would be fine. We were all very relieved to hear this.
His family and I were careful to not let Steve know how sick he was and what he had been through. With the extreme state of confusion, we didn’t want to add even more stress to his already scrambled world, so we kept it very simple with him. We told him daily how well he was doing and that the doctors were very happy with his progress. The nurse on duty would come in daily and ask him certain questions to see how oriented he was. The questions were always the same; what is your name, how old are you, where do you live, and do you know where you are? Steve would answer the first three correctly, but the last one would sometimes stump him. When he found out he had answered the last question incorrectly, he would get upset. Each day he became more desperate to get his clarity back.
One night as we were leaving to go back to our room at Taylor house to get some sleep, Steve whispered to me in desperation, “no amputation!” I thought he was having another hallucination, so I assured him there wouldn’t be an amputation and left for the night. In the middle of the night, I woke up very disturbed by his comment. It suddenly dawned on me that Steve was scared because his legs weren’t moving and he didn’t know why, so he thought they were going to amputate them. He needed to know what was really going on. It was time to tell him most of the story about his journey in ICU. I didn’t want to tell him he had almost died. He wasn’t ready for that, but I could tell him that he had been very sick and why he had been so sick.
I got to the hospital at 6:00 the next morning. I felt an urgency to tell him what his diagnosis was. I could only imagine the fears he must have been feeling all night about what was wrong with him. He was awake when I walked into his room and as soon as I kissed him good morning, I asked him if he had been told what his diagnosis had turned out to be. He told me no. I then began to tell him that he did not have parasites like we had believed he did for the last year. He actually had lupus and that he had a wonderful doctor who was treating the lupus and he was now finally getting well. When I told him this, he breathed a big sigh of relief. Then I told him his legs weren’t moving because he had been in bed for a few weeks and this made his muscles too weak to make them move on their own. He again sighed another big sigh of relief. He then asked me, “So, no amputation?” I told him absolutely not! A tear trickled from his eye and he fell into a long and restful sleep. His brain was beginning to grasp his new reality.
Steve’s hallucinations and mental fog were some of the most frustrating aspects of our time on the second floor ICU. That, and Steve’s inability to swallow. Steve was thirsty, very thirsty. His throat was dry from everything it had been through and he would beg us for a drink of water. We couldn’t give him water because he might swallow it the wrong way and aspirate. This was drilled into us by the speech therapist and the nurses. All we could do when he begged for water was offer him a moistened sponge on the end of a small white stick to wet his mouth. He hated those sponges. He wanted a drink and only a drink. He wanted ice water the most. He would talk about cold drinks for hours each day, describing how good it would be to have one. We learned to never bring water bottles into the room. Tears would well up in his eyes if he even suspected that we might have a water bottle on us. This was excruciating for us. All we wanted to do was make our beautiful man comfortable, and now we had to deny him this basic request. This, above almost all other things, made us cry.
Between his mental confusion, his hands being kept in mittens to keep him from pulling out his tubes, the new feeding tube in his stomach that made his stomach upset, not being able to move his body, and now his thirst for ice water, it became our daily routine to console him and make sure he was safe. If his hands got free from the mittens, he could unconsciously pull life supporting tubes out and this could be detrimental. He hated the mittens and was constantly trying to find ways to get them off. We would sit by his bed each day taking turns holding his hands so he could have the mittens off. As long as we were holding his hands he couldn’t grab at the tubes and wires. When we left the room for any reason, we had to make sure the mittens were back on. He would look at us as if we were his jailers when we had to put the mittens on.
As Steve became more aware of things, he began to tug and pull at the mittens more, trying to get them off. His fingers were becoming very adept at inching their way to the velcro that fastened the mittens around his wrists. He would delicately peel the velcro back, through the mesh of the mitten, until he could almost get his hand free. We would instantly fasten the velcro again. This was becoming his new focus. The nurses had become aware of his new trick and were watching him very carefully. Around 7:00 one night Steve ordered us out of his room. He said he wanted to be alone for a while. As we left his room, I turned to tell him goodnight and saw him staring at his mittens, turning his hands slowly. He was planning an escape. We told the nurse and left for the night.
We got a call from the hospital in the middle of the night. The last thing we wanted was a phone call from the hospital at 2:00am. With all of our hearts pounding, my sister in law grabbed the phone. Steve’s night nurse told her that Steve had managed to get his mittens off during the few minutes the nurse was out of the room with another patient and had pulled his dialysis catheter out. The catheter had been in a main artery, so Steve bleed excessively. He needed two units of blood, which had already been given. After that, they gave him morphine to help him rest and ease the pain he seemed to be in.
The use of morphine meant more mental confusion with more hallucinations. We were going backwards instead of forward. Now more days had been added before his brain could clear up.
The morphine became a big issue between me and the nurses. They used it liberally if it was on the chart. Steve couldn’t have any other kind of pain reliever because of his liver failure. His liver could not process it, so morphine was the only drug that could be given to him when he was in pain. Steve was usually not in pain. He would become very uncomfortable from lying in the same position a little too long, but as soon as he was repositioned, he was fine. It was a policy at the hospital for the nurse to often ask the patient if they were in pain. If the patient said yes, then a pain reliever was given immediately. In Steve’s case, of course, it was morphine. I made it very clear to the nurses that I did not want Steve to have any more morphine unless he really was in extreme pain. Discomfort did not count as extreme pain. They needed to readjust him in bed if he said he was in pain and then ask him again. Most of the nurses were very good about this, but a few didn’t want to listen to me. It was easier for them to just give him the morphine. More morphine would always set his recovering from the hallucinations back by about three days.
The doctor on duty agreed with me and made sure the chart was clear that morphine was used only in an extreme situation. Steve’s mom, sister, and I were vigilant during the day, but we weren’t there at night, so we had to trust that whoever the night nurse was that night would hear my strong words as I left each night to NOT give Steve any morphine. This usually worked, but not always. I would sometimes arrive the next morning to a more confused husband and a nurse saying they decided to give Steve morphine because he was uncomfortable.
One step forward, three steps back. This was our life on the second floor. We were discovering what being a patient advocate was really about. Steve now needed us there day and night to make sure his needs were being fully met. Moving to a new room on the third floor was about to change all of that.