lilyjohn Posted July 5, 2004 Share Posted July 5, 2004 Not long after the day sitter left the respiratory therapist came to give Johnny a breathing treatment. He was still long enough for the treatment but he couldn't hold the pipe himself. His arm was jerking so violently that he kept hitting himself in the head with the pipe. She held the pipe for him until the treatment was finished. She listened to his lungs and I asked again how he sounded and about the air movement. I was told that he sounded better and she reassured me that he was moving air all the way down in both lungs. As she was leaving I asked "if he sounds better and is moving air all the way down why are they saying that he is dying? Is it because of the blood gases?" Her reply was "I don't know. I saw the test results and his O2 is really not that bad." The words of the therapist reassured me. I knew that I was right about Johnny's condition. I couldn't understand why the doctor had told that to Johnny Ray or why Johnny was still so restless. The restlessness continued unabated. He would sit up for a second then lay on his left side. Then he would sit up again and then lay on his right side. The next time he would lay on his back and no sooner was he down than he was up again trying to climb out of bed. All the while he was calling me. It was an endless cycle that never slowed. Up, "Mom" on the left side, "Lily" then up and onto the right side "Mama where are you?" then try to get out of bed. "Mom, Mama, Lily" always the up and down and from side to side and calling me. It just never stopped. I didn't understand what was happening but I just kept trying to calm him and reassure him. I felt like with the Ativan it was just something that we had to get through. There was just no time to think or try to figure out what was causing him to act that way. That went on and on and on. Every two hours the nurse would bring pills, either the Vicodin or the Morphine. Each time I was told it was to calm him down. Johnny was so messed up by then that he would take the pills without question. It didn't calm him. The restless continued and there just seemed no end in site. I had time for nothing but touching and reassuring. "I'm here Johnny". "Here I am Honey. I'm not going to leave you. It's alright Baby I'm here. I'm here Honey. I'm here." By eight o'clock he had started to slow down. He would still sit up and turn from side to side but not as often. He started calling me less and less. Then the nurse came with a pill cup and tried to put pills in his mouth. He pushed her hand away and asked "what is that you're trying to give me?" She told him that it was his pills and he needed them to calm him down. He told her that if she wanted him to take them to put them in his hand and he would take them himself. She said "No. You are only going to drop them." He still pushed her hand away and said "if you want me to take them put them in my hand. That is the only way I'm going to take them." She put the pills in his hand and his arm jerked and the pills fell on the bed. She picked up the 2 Marinol pills and tried to put them in his mouth. He looked at them and asked "what is that you are giving me?" She told him that it was his Marinol and he took them. Then she picked up the Morphine and tried to put that in his mouth. Again he pushed her hand away and put his hand out for her to put it in his hand. He looked at the pill and said "this is not Ativan is it?" She said "No it is your medicine and you have to take it to feel better." Then he said "this little green pill (it was blue) it's not Codeine is it?' That is when she told him that it was Morphine and that if he took it it would make him feel better. He took the pill and she left. He was still restless and constantly moving and after a few minutes it got worse. The only way to describe what was happening is to say it was like a movie that you put on fast forward. The same thing was happening but much faster. He wouldn't even get all the way down until he was up again. He became more determined that he was going to get out of bed so every time he got up he put his feet over the rails and the sitter would push him back down. He never stopped calling me the whole time then he started pulling the oxygen tubing out of his nose. I would put it back and he would pull it out again. I knew there had been times that he had said the oxygen made him feel like he was drowning but he was on five and a half liters he had to need it. I was afraid that he couldn't breathe without it. I kept putting it back and he kept pulling it out then trying to get out of bed. It just never stopped and seemed to be happening faster and faster. Somewhere during that time the nurse brought another small bag and attached it to is IV. When I asked what it was she told me that it was the anxiety medication. Then the man in the next bed started hollering for the nurse. He kept hollering "nurse, nurse" and Johnny kept calling me over and over again. The nurse got to the man next to Johnny and he asked her to get him another room. She told him that she would try to get one for the next day but that didn't satisfy him. He kept demanding another room and when the nurse asked why he said "that man over there is dying and I've known him for twenty years. I don't want to stay here and listen." He didn't even know Johnny he was delusional but I can't help but wonder how much his behavior played a part in what they did to Johnny. The movement continued. It seemed unstoppable and always he was calling "Lily, Mom, Mama". The whole world seemed to be nothing but what was happening in that room. The constant movement and him pulling the oxygen out and me putting it back. Him trying to climb out of bed and the sitter pushing him back down. There was no time to think and no rest. It just kept on and on for what seemed like an eternity. Finally I told the sitter to put the side of his bed down. He protested but I demanded so he did. I sat on the bed and when Johnny tried to get out I was there. He sat up and hung his legs off the side of the bed. His arms were jerking constantly and more violently than ever. To try to still the jerks I took his hand in mine. He squeezed my hand and he felt so strong. Somehow holding his hand stopped the jerking and he squeezed my hand harder. Then he started pulling my hand toward him. He pulled my hand to him and kissed it. Then he slowly lowered my hand back to the bed. All of the time he was doing that he never lifted his head. His chin was on his chest and he was wobbling like he would fall over. I was afraid that he would fall off the bed so I helped him lay back down and had the sitter put the side of the bed back up. Then it started all over again. The same movement and him calling me,trying to rip the oxygen off then trying to climb out of bed. That continued at a pace that seems impossible to comprehend. By ten o'clock he hadn't slowed down. Then the nurse came again. She said that she had something to help calm him down. When I asked what it was she said "Vicodin". Before she had a chance to give them to him someone called me to take a phone call. I went to the nurses station and didn't see how he reacted to the pills. When I answered the phone it was Julie. If there was one thing or one person that I didn't need after the day I had been having it was Julie. She demanded to talk to Johnny. I told her that he was in no condition to talk to anyone but she wouldn't hear it. She wanted to talk to his nurse so she could learn "what was really going on with him". I put the phone down and went for the nurse. I found her still by the side of Johnny's bed. He had taken the pills but was still moving and she was trying to get him to be still. After about three minutes she left to take Julies phone call. The nurse sent someone to tell Johnny that his daughter was on the phone and ask if he wanted to talk to her. He said yes. The nurse transfered the call to his room but when I answered the phone there was no one there. Johnny stayed still or I should say his movement was not as fast paced as it had been for the past several hours. Then about ten fifteen I was told that his daughter was on the phone again. I asked if he would talk to her and he said yes. The call was transfered to his room. I handed the phone to the sitter who was standing on the other side of Johnny's bed. He held the phone at Johnny's ear because when Johnny tried he kept hitting himself in the head and dropping the phone. Everything that she had done to both me and Johnny came to mind. The last thing I wanted was to have anything to do with her. Then she had all but accused me of lying when I told her that Johnny was in no condition to talk. No matter what my feelings were toward her I wouldn't have done that. I knew that despite the things she had done to Johnny and his suspicion that she was not his daughter he still needed her in some way. She had been there to tell him that she loved him when his sons were either ignoring him or fighting with him. I knew that he needed to take that call or he wouldn't have agreed to it. Still I didn't want to even listen to their conversation. I was just too angry and too tired. It was because of that that I was not with him when he fell asleep. I motioned to him to let him know that I was leaving to go outside for a while. I heard him say into the phone "Julie, Oh Pam yes I know. Harold's daughter." I thought that he was confused about who he was talking to. As I started to leave I saw that he was looking at me. I could see a sparkle in his eyes. I'm not sure what put that there unless it was because of the drugs. He was still talking and looking at me as if he wanted me to hear what he was saying before I left. I heard him say "they are telling me that I am going to die in seven days and they are full of shi_." Where did that come from? Had someone told him that and if so who? I will always wonder about the times that I was away from him. That day he asked to go to the hospital and went in to see Gordon alone. Then there was that weekend at the hospital when Gordon told him that he was not going to get better only worse. Was there more to that conversation than he told me? I can think of a thousand other times but I will never know the answer for sure. When I got outside I walked far enough to see his window and watch just in case. I decided to make some calls and update people on what was going on. I couldn't have been out there more than five minutes when I called Pam. That is when I learned that it had been her that Johnny was talking to. She told me that they had talked for a minute and had started praying together when he was silent all of a sudden with no warning. The sitter had come on the phone and told her that he was sleeping and hung up the phone. Hearing how fast he had fallen asleep disturbed me so I told Pam that I had to get back to Johnny and hung up. I saw that he was sleeping and I was relieved. It had been one of the longest days of my life. I was exhausted so I knew that he had to be even more tired than I was. As I watched him sleep I felt that whatever had caused the crisis that we had been through was past. He was sleeping soundly without that constant movement and I could tell it was a normal sleep because he still moved once in a while like he had always done. As I sat there watching him sleep the day caught up with me. I was so tired I could hardly keep my eyes open. My mind kept going over all that had happened that day. I ached everywhere and my mind just felt like it couldn't take anymore. I sat there for about an hour just watching him sleep and trying to relax my nerves. I had no idea what the next day would bring. I knew that he would be expecting me to take him home and was pretty sure that I wouldn't be able to and that would cause another problem. I also knew that the next day would be the first of the month. I was supposed to start making the arrangement to take him to the new treatment center in Seattle..I knew that I would need someone to either get his records for us or stay with him while I got them. I had no idea how that would be arranged. There had been no one to help the whole time of his treatments, the anxiety and his hospital stays. Somehow I knew that I would have to manage on my own. I had to try to get a little sleep while Johnny was resting. I told the sitter that I was going to lay down in the room down the hall for a while. I told him that if there was any change in Johnny good or bad that I wanted to know immediately. He promised that he would find me if anything happened. I left to go try to sleep at around eleven thirty. I lay down but I couldn't sleep. I was just too tense. I knew that something had been very wrong with Johnny's behavior but couldn't explain what that was. I kept waiting for someone to call me and tell me that he was calling for me again and that the nightmare from earlier was starting again. I just couldn't sleep and felt uneasy about not being with Johnny. At twelve thirty I gave up and went back to his room. When I got to his room the sitter was reading a magazine and the television was still on. When I looked at Johnny I felt that something wasn't right. He was laying on his left side, a side that he never slept on. His right arm was hanging off the left side of the bed. I remember seeing the netting on the IV and the orange band with his allergies on it. I thought that when he woke up his arm would be asleep because of the way it was just hanging there. Then I saw how still he was. That just didn't seem right so I asked the sitter "are you sure he is alright? He doesn't usually sleep that hard." He told me that he was fine he said "he is just tired from all of the jumping around he did last night." I started to go to him but the sitter told me not to disturb him. Then I asked about his vital signs. The answer I got was "we didn't take them. We don't want to disturb him." I stayed watching him for a while and the things the sitter said did make sense. He had to be tired from the night before. Still I had never seen a hospital not take vital signs so they wouldn't disturb someone. I still felt a little uneasy but decided to try again to get some sleep. I just couldn't sleep. The picture of Johnny laying there with his arm hanging off the side of the bed stayed in my mind. Something just wasn't right. I stayed there for a few minutes then went back to Johnny's room. The sitter was sleeping when I got there with the magazine almost falling in the floor. I woke him when I got in the room. Johnny was still in the same position and he was very still. I was getting more uneasy by the minute but still when told not to disturb him I didn't go to him. I'll never understand why I listened and didn't go to him and try to wake him. Maybe somewhere in the back of my mind I knew and just didn't want to find out. I asked the sitter again "Are you sure that is a natural sleep and he is not in a coma?" "Yes it is natural" he said, "he is just tired don't disturb him". "How are his vital signs?" I asked. "We haven't taken them yet. We don't want to disturb him." I just stood there watching him and staring at his arm hanging off the side of the bed. I knew something wasn't right. Why didn't I go to him? Why didn't I demand that they check him and take his vital signs. My God I knew something was wrong. Why did I just stand there? Why? Why? Why? I kept getting more and more uneasy. Then the fear hit me. "Something is wrong. Why is he so still? Why aren't they checking him? I should go to him but I can't. Why I can't I go to him? What's the matter with him why I am I so afraid. Johnny wake up. Please Honey just wake up so I know you are alright. Why don't they take his vital signs. Can't they see something is wrong. I told him it's not right why aren't they doing anything?" I couldn't stand it any more so I asked again if they were sure that he was alright and not in a coma. Again I got the same answer. I wanted to go to him but I couldn't. It was like I just couldn't make my legs move. I just stood there looking at him knowing something was wrong but not doing anything. I should have gone to him the first time when I saw him like that but I didn't. How much difference would it have made? Then the sitter told me that at four o'clock they would wake him and bathe him. It was close to three by then so I stayed. I just stood there looking at him for over an hour knowing that something was wrong. Where was my mind? Why? My God why didn't I do something? I still see that image in my mind. I can see Johnny laying there on his side so still. I can see his arm with the netting and the orange band. I see it so clear and remember thinking that something just wasn't right. I know part of it was because he was so still but I know there was more. It just didn't register at the time. Now when that image comes to me I still see the same thing and I'm almost certain of what I missed that morning. No matter how hard I try I don't see the IV tubing attached to his arm or hanging down the side of his bed. He had been on Saline from the first time I saw him Friday night. Why would they have taken the IV off of him? At four o'clock the sitter left and came back a few minutes later with a pan of water, towels, a clean gown and a diaper. He put his hand on Johnny's shoulder and turned him onto his back. Johnny's arms just flopped over and he was like a rag doll. The sitter removed his gown and washed his upper body turning him to reach and still he never moved and his arms just flopped to his side. I stood there watching knowing with each second that something wasn't right. Still the sitter continued to bathe him. He removed the diaper and sat it on the tray table and I saw that it was dry. He kept washing Johnny's privates and I was thinking "why doesn't he wake up? He doesn't like anyone to see him like that. He is all exposed and still he isn't saying anything. What's wrong Johnny? Why don't you wake up?" Another aide came and they changed his bed rolling him from side to side. They just continued to do what they were doing. They had to know that something was wrong. He was unresponsive and like a rag doll. Still they bathed him and did nothing. Even worse I stood there watching knowing that something was wrong and did nothing. Why didn't I act? Why couldn't I act? I should have been screaming at them to check him and do something but instead I stood there paralyzed and did not one damn thing. After they finished bathing him the nurse came to take his vital signs. She took one look at him and said "oh he is barely breathing." That is when I went to him. That's when I realized what I had seen that bothered me. I could see just the upper part of his chest moving in and out. Just that one small spot no larger than my hand. I took his hand and it was like touching an ice cube. That is when the fear really hit me. Something was seriously wrong. The nurse took his blood pressure and it was normal. I can't be certain of the numbers but I think it was one forty something over eighty. The monitor showed his heart rate at 80 but when the nurse put the oxometer on his finger his oxygen reading was 0. She took it off and tried it on his ear. Still it read 0. His bed started to move and someone took a portable oxygen tank and took his tubing from the wall and hooked it to that tank. I didn't see anyone go for it. Was it already there? They started pushing his bed and I had to turn lose of his hand. I asked where they were taking him and the nurse told me "we're taking him to ICU. We have to work on him. He's full code." I tried to keep up but someone stopped me. She took me to an elevator and we went down to the second floor. I was put in a waiting room and told to stay there and wait. Someone would come for me. I sat there in that room waiting. I had no idea what was going on. My thoughts were racing. "Please God let him be okay. Please Johnny be alright. I'm here Honey. I'm here I'll be there as soon as they let me. Oh God please don't let him have brain damage. Oh God what are they doing to him? He has to be alright. Please, please he has to be alright. He is going to be so afraid when he wakes up on that ventilator. It's okay Honey we'll find a way to manage. I'll take you to that other place and they'll help you and you'll get off of that thing and be alright. Please God please. Please just let my Johnny be alright. Don't let him be so afraid!" I'm not sure how long I sat in that room alone terrified wondering what was happening to Johnny. I know they took at least fifteen minutes to bathe him and another five passed by the time the nurse took his vital signs and they left with him. I had to be there for at least twenty five minutes but I'm just not sure. It seemed like a life time before someone finally came to take me to him. The first thing I noticed was how empty the room was. Where were the doctors and nurses? Where were all of the machines and trays of equipment? There was no one in there with him but a nurse standing beside is bed. The only piece of equipment was a monitor that was hooked to him recording his vital signs. Instead of a small portable one this was a large screen above his head where everything was displayed. He was asleep and had a mask and bag on pushing the oxygen into him. When I saw that I was relieved. He must not be as bad as I thought because he is not on a respirator. The nurse stood at his right side and I was on his left. I took his hand and it was still like ice. I saw on the monitor that his oxygen level was in the forties. As I watched his oxygen climbed into the high forties then went back down. His heart rate was still in the 80s. It wasn't racing nor had it slowed. I started talking to him telling him that I was there and wouldn't leave him again. After a few minutes he started to gag on the piece of plastic in his mouth. I thought he was waking up. When he didn't stop gagging the nurse took the plastic out of his mouth. As soon as she did that his oxygen dropped to 0 again and didn't go back up. Then he started kicking his legs and trying to raise up. Again I thought he was waking up.Then I saw his heart start to slow and that is when I knew. "I'm here Johnny" heart rate 70. "I'm here Baby I won't leave you I promise please Johnny please.' 60. "No Johnny don't go don't leave me. Please don't leave me." 50. "Oh God no please no. Johnny I love you please don't leave me."40. " I promise you Honey I'll never leave you. We'll go to Seattle and you'll be alright again. Don't leave me please don't leave me."30' Your boys are on the way. They'll be here anytime. You've got to wait for them. You always want them well they are coming"20 "Johnny please, please, don't leave me. I love you. I need you. Please".10 " No Johnny, No Honey. I love you. Always and forever Honey always and forever. Please God Please don't take my Johnny. NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!! There was a clock on the wall directly above the monitor that I watched as his heart slowed then stopped. The time was 4:55 am. I knew that he was gone. I looked at the nurse and she shook her head. She started to remove the mask and the wires that were hooked to him. It wasn't real. "God it just couldn't be real. How could I live without my Johnny. Oh God he was so afraid to die. He must be so scared. Oh God please please help me. This just isn't real. He's just sleeping. He has to be just sleeping." She pulled a chair up to the side of the bed where she had been standing then she left. I sat there and took his hand. It was so cold. That hand had squeezed mine just hours before. Those hands had held mine and they had loved me. How could they be so cold. I kept talking to him. I told him how much I love him. I told him that I didn't know what was happening to him. I said that I just didn't see. I couldn't understand why no one hadn't done anything for him. I told him that I was so sorry that I didn't see and do something. Over and over I told him how much I loved him. Pictures kept flashing through my mind. I saw him when he was young and the first time he had kissed me. I saw that look in his eyes that always said how much he loved me. I remembered the times he had loved me and the jokes that he made about making love to me. It seems like every minute we had together passed though my mind while sitting there. Then the questions started. I just had so many questions. How do you describe what it is like to die? How do you describe what it is like to have a part of yourself die? There are no words that can express what I felt as I sat there alone with Johnny after he died. I know that somehow the world was jerked from under me. I had nothing to hold onto. Everything is gone. My hopes and dreams are gone. All of our plans, all of the touches and kisses are gone. I don't have his voice to call me or say my name or one of the pet names he had for me. I can't feel his touch or share his fears and heartaches and he can't share mine. We only had five months together but those five months gave me more love and more hope than I had ever had before. Then suddenly it was all gone. He was gone and the hole left in my life is so big that at times I think I will get lost in it forever. I couldn't leave him. I sat there holding his ice cold hand and looking at his face. It didn't even look like him for some reason. In just that one split second he changed. I could still see the black in his beard but he looked so different. It is so hard to explain but that is how it was. I actually sat there waiting for him to move. It seemed like he would move and I would realize that he was alive not dead. I couldn't leave him. He was so afraid to be alone when he slept. How could I leave him? How could I leave him and never take him home? How could I leave him knowing that I would only have one more chance to see him again? He was just so afraid to be alone. The nurse came twice while I sat there. She came once to ask about donating his eyes. I had to tell her that I had no right to make that decision. She had to ask his sons. My God they can't take his eyes! Not those beautiful golden eyes with that sparkle in them. How could I stand it if they took his eyes? She came one more time to tell me that the boys were all on their way. I still sat there alone. Sometime later someone came with our things and dumped them in the floor at my feet. I saw when they came but I don't know if it was a man or a woman. I was still holding Johnny's hand and talking to him. Eventually the boys came one by one. First Johnny Ray, then Tom and Jamie. Still I sat there holding his hand. I knew that I was supposed to leave but how could I? I just couldn't leave him alone and I couldn't go knowing that the next time would be at his funeral and the last time that I would see or touch him. Finally someone told me that it was time to leave. I didn't want to but I had to. The boys had all come and gone and they were waiting for me. I still didn't know my way home and it was still so foggy. That cold white wall of fog stayed so cold as cold as the ache in my heart. I had to tell my Johnny goodbye and leave him there all alone. It was the hardest thing I have ever done in my life. I kissed him and told him again that I would love him always and forever. I kissed his hand. The same hand he had pulled mine to his lips with the night before. Then I told him not to be afraid and that I would see him one more time. It took all of the effort I had to walk out that door and leave him there without me. It was near 8am Monday morning December 2,2002. The day my world of hope and dreams, laughter and love ended. 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