Chapter Ten: Re-entry
I hadn’t seen Steve awake since he had gotten off the ventilator and was placed in the new ICU room. He had awakened the night before while I was sleeping a much needed sleep. The first time seeing him awake happened the next morning as I entered his room. He was groggy from a long night with his cousin, but he was awake. I held his hand, gently kissed his lips, and told him good morning. I had missed kissing those lips. The ventilator tubes had prevented me from having that pleasure. He was very glad to see me. I saw tears forming in his eyes. His throat was very sore from two weeks with a large tube down it, and after a night of sharing songs and jokes with his cousin, all he could do was whisper. The first words he whispered to me were, “I’m sorry”. He told me he was sorry for putting all of us through this experience. Tears flowed from his eyes as he grasped his new reality. I told him to never, ever apologize to me about what was happening. I loved him and he was alive and that was all that mattered. He squeezed my hand and drifted off into a restless sleep. This was the last full cognitive moment we would have with him for the next two weeks. The severe hallucinations began a few hours later.
Steve’s body had been through severe changes. The first few days in ICU he gained forty pounds of water weight. Failed kidneys, extreme doses of prednisone, and inactivity helped created this condition. His body was so large, it was difficult to recognize him. He’s always been a slender man, so this new development was shocking for all of us who knew him well. Eventually, dialysis would remove most of the water.
Dialysis began three days before the ventilator was removed. The goal was to remove the fluid which would protect the kidneys from further damage. There was hope the kidneys would recover, but only time would tell if that was going to be true. If they didn’t recover, then he might have to have a transplant or be on dialysis for the rest of his life. Each day the kidney specialist, Dr. Chen, would quietly come into his room and tell me how his kidneys were doing. She always gave me such hope. She was a soft spoken Chinese woman and her manner with Steve was always so gentle. I looked forward to her daily reports because she never said anything negative. She would only focus on the positives, even if they were very small. Because of her positive nature, I made sure I arrived early each morning so I wouldn’t miss her report.
In addition to the extreme water weight, the blood vessels in Steve’s chest and stomach were creating tiny red dots where the blood was rising to the surface from the pressure of the extreme swelling. His hair had begun to fall out because of the lupus and the chemotherapy. And, his skin and eyes were a bright yellow from the liver failure. There were times I didn’t know how his body was going to recover. It looked like such an overwhelming task to make it well again. I didn’t even know if a body could recover once it had gone this far into breakdown. These were the times I had to remember Rojdnan’s words, that things were going to look very messy for a while and it was my job to not believe in the messiness of reconstruction.
Once most of the water was successfully removed by dialysis, we saw the ravaged body of a man who had been inactive for too long. Between his advanced lupus and lying in a hospital bed for three weeks, his muscles had wasted away and atrophied. My husband’s beautiful shoulders, arms, and chest now looked like bones with skin hanging off of them. It scared me to see how emaciated he was. He must have weighed 120 pounds, or less. He was being feed through an IV, so he was getting nutrition, but it wasn’t optimal nutrition. He needed to start eating as soon as he could. This would help restore the muscles so he could move again. At this point, even raising his arms was impossible. All he could move were his hands. He was going to have to learn how to do everything again.
Now, in the new ICU room, off of the life support machines and the powerful life saving drugs, it was time to find the strength to awaken his body. The first thing to awaken was his brain; a very confused, drug saturated brain. Cleaning out the confusion caused by the powerful drugs now created nightmarish hallucinations. The nurses tried to prepare me and my in laws for this long and difficult journey, but there’s no way you can prepare someone for this. All I could do was hold his hand and assure him that he was safe from the monsters and demons that seemed to be in his room.
I cried a lot during this time. I had my husband back, but not really. I didn’t know if I would ever fully have him back again.