lilyjohn Posted November 25, 2004 Share Posted November 25, 2004 The ringing of my cell phone woke me Friday morning. I was immediately awake and a trace of fear hit me. The only one who would be calling my cell phone that early would be Johnny or the nursing home. I was still very uneasy about that cough the night before. It was Johnny. Later I would see that the exact time of the call was 5:17am. His first words were "I've already had one cup of coffee and want you here to share another. I've ordered your breakfast so you can eat with me. I'm ready to come home." I explained to him that I had not gone to sleep until very late and would have to take time to make some coffee and walk Misty. He told me to do what I had to do then get myself to him. His last words as always were for me to be careful. While my coffee was making I got dressed and made the bed. I poured my coffee in my travel cup, took a couple of sips then took Misty out. Once outside I noticed that the fog was thicker than ever and it was very cold. Once at my car in the parking lot I saw that my windows were covered with ice. I started the car and turned the defroster on. Once the ice had softened a little I used Johnny's handicap license to scrape the ice from my windshield. I knew that the drive to him would be a slow one because of the ice and fog. I was just pulling into the parking space when my cell phone rang. I knew that it was Johnny and I was already there so I didn't answer it. When I rounded the corner to go to his room I saw him. He was already dressed and sitting in the wheel chair in his door way. I heard him say "it is time to get your buns over here." Then he saw me and told me that he had been calling me because it had taken me so long to get there. He had been worried and eager for me to be with him. I explained to him about the fog and ice making it hard for me to get there any faster. All he was interested in was that I was finally there and he remarked that he was glad I had taken my time and was safe. I noticed that he wasn't coughing as much as he had the night before but when he did cough it was very productive. His voice had gotten more raspy as well. I got us another cup of coffee and we talked while waiting for our breakfast. He had chosen again to have breakfast in his room. He was in a hurry to get it over with and leave. He told me again that he felt better and stronger than he had in weeks and that my concern about his cough was not necessary. The night nurse was still on duty and when he came to make his last rounds I asked him to listen to Johnny's chest. He listened and told me that he didn't sound any different than he aways had. I also asked him my standard question. "Is he moving air all the way down in both lungs?" He answered "yes". After he left the room we speculated on whether the Morphine had caused him to start coughing. He told me again how it had affected him and that he would not take it again. He also told me that the night nurse had told him not to take it. I've wondered many times if that nurse told him that because Johnny said it bothered him and he just told him that he didn't have to take it if he didn't want to. Then again did he just tell Johnny "don't take it" and if so why? When the shifts changed at 8 o'clock the nurse came to his room on her rounds. It was time to take his vital signs and record them. His heart rate and temperature were both normal. His oxygen saturation reading was in the low 90s and his blood pressure was a little higher than normal. When she was finished with his vital signs I asked her to listen to his chest because he was still coughing. She listened then said "oh yes there are fluid sounds in your lungs. I have to call your doctor." Johnny was still insisting that he felt better than he had in weeks. I've wondered a thousand times what would have happened had I listened to Johnny and not insisted that the nurse listen to his lungs. If I had taken him home like he wanted would the problem have cleared on it's own? No matter how many things it could have been that caused that cough I will always believe that the Morphine was the primary cause. Once it had worn out of his system maybe he would have gotten over it on his own. I'm certain that the upset of that morning is what made his condition worse. The delay in going home caused him to be very upset. I also remember that the day before that cough started all of his blood work and vital signs had been good. If an infection had been brewing surely at least one of those things would have indicated it. Breakfast came and he ate it all. As soon as he was finished he told me to start getting his things together because it was time to go home. I was concerned because we still had heard nothing more from his nurse. I told him that I would start but first I wanted to know what the doctor had told his nurse. I went in search of her and found her on her rounds giving out the morning medication. When I asked her what the doctor had said she answered "I haven't had time to call him yet". I went back to his room and told him that the nurse hadn't talked to his doctor yet and I felt that we should wait to leave until she did. He wasn't very pleased but agreed to wait. By nine we still hadn't heard anything from his nurse so I found her and asked the same question again. I got the same answer. She hadn't had time to call yet. When I told Johnny he was very annoyed. He was ready to go home and no one was making it happen. As time passed and still no word from her he started getting very agitated and restless. Again I found her and got the same answer. His doctor had still not been notified about the fluid sounds in his lungs. The more time passed the more agitated he became. I had seen him display a lot of different emotions but what I saw that morning was different than anything I had seen before. The physical therapist came to work with him a little past ten o'clock but he wouldn't co operate. She pushed him out into the hall and I followed. She managed to convince him to do a few leg and foot exercises but his mind was not on what he was doing. Several times he looked at me and told me " it is time for you to take me home". The therapist worked with him for a few minutes but when it was obvious that she was getting nowhere with him she gave up. He was still sitting in his wheel chair in the hall and the nurse was nowhere to be seen. He asked me to push him for a while in the wheel chair. When we got to the nurses station she was not there so we passed it up and went to the end of the hall. There was a door there that went out to a patio so we stayed there for a couple of minutes looking outside. As we turned to go back toward his room he spotted one of the aides. She had the parrot on her shoulder that often rode there. Johnny asked her if she knew where the nurse was and she said "no". The parrot said "I'll drive" and once again Johnny made the remark that he should be taught to say "You're drunk. I'll drive". Once back at the nurses station we saw that there was no one there. He wanted to wait for the nurse so we stayed. We had only been there for a few minutes when someone in the room next to the nurses station started moaning very loudly and making strange noises. That upset Johnny and he told me to get him away from there. We started back toward his room looking for the nurse as we went. We never found her. I started to stop at his room but he insisted that he wanted to go some more. Just two doors down from his room were the set of double doors with the keypad. The same doors that we had gone through to get to the dinning room and to get his hair cut. He wanted to go through those doors. I tried to talk him out of it. I told him that we should stay close to his room so we could be found if the nurse or his doctor came looking for him. He answered "if they want me they'll find us". I still tried to argue with him but he was insistent. Someone put the code in and the doors opened. He started pushing himself through so I pushed him. For some reason they had the very worst of the Alzheimer's patients in that room that morning. We had not gone more than a few feet when Johnny started screaming "My God My God look at that. I'm getting sick. Take me out of here and get me home. I want to go home right now. I came here of my own free will and no one can keep me prisoner here." I rushed back to his room with him but he wouldn't stop screaming that he wanted to go home and we were keeping him prisoner. By the time we got to his room he had made so much noise that the nurse was there. She tried to talk to him but he wouldn't listen. He was very agitated and just wouldn't be calmed. She left and I'm sure that if she called his doctor at all it was when she left us there with him screaming about being held prisoner. I had never seen anyone react the way he did that morning. His behavior was totally irrational. At the time I was very frightened. I was much more worried about his behavior that his illness. Sense then I have learned about both the withdrawal symptoms of the Paxil that had been stopped less than a week before and that agitation and fear are two of the side effects of Remeron. I strongly suspect that it was one or both of those things responsible for his behavior that morning. His reaction to the Alzheimer's patients is something else I speculate about. Why did that have such a profound effect on him? I know that he remembered his dad's mental problems and the brain damage that his brother had suffered from a heart attack. Could it have been those things that caused his reaction? After the nurse left I sat on his bed with him. He continued to demand that I take him home always saying that we couldn't hold him prisoner there. The phone that was usually at the nurses station was on his tray table. He picked up the phone and called Valerie. He was telling her over and over that he wanted her to come and get him because they were holding him prisoner and I was helping them and wouldn't take him home. After he finished talking to her he tried to dial another number but by then his hands were shaking so much he couldn't dial the phone. When I asked who he was calling he said he wanted to call his doctor. To buy time I dialed the number for him. Once on the phone with the receptionist he told her the same thing he had told Valerie. By then he was shaking almost uncontrollably and it was obvious that he was very frightened as well as agitated. I took the phone from him and talked to the receptionist. I told her that he had a serious problem and was very upset and needed to see his doctor right away. She told me that she thought his doctor was on the way there but said she may be wrong. She had just heard him say that he was on his way to the hospital. Johnny was not in the nursing home at the hospital. I told her to not mind because I was taking him out of there right then and bringing him to the doctor. The minute that Johnny heard me say that I was checking him out of there he calmed down. His agitation had started to build nearly three hours earlier yet when he heard those words he calmed down instantly. All traces of the agitation and fear were gone. The only sign that he had any problem was the shaking of his hands. I found his nurse and told her that we were leaving. By then the head nurse was there and while I gathered Johnny's things she brought a paper for him to sign. The paper stated that he was leaving against their advice even tho his doctor had said that he could leave whenever he wanted to. It stated that there was obviously something wrong with him. He signed the paper. All he wanted was to get away from there as fast as he could. Then she handed me a paper and a plastic bag. When I asked what was in the bag she told me it was his medication. The paper stated the medications that he was taking at that time. It was Predizone, Remeron, Marinol, Vicodin 2 every three hours and Tylenol 2 every four hours as needed. It also stated that he was to receive the nebulizer treatments every four hours while awake and at night when needed. The Morphine was listed as given every four hours for shortness of breath. Nothing was said about anxiety. That paper listed every medication that he was taking and the times they were to be given. The plastic bag only contained two medications. There were over thirty tablets of Hydrocodone 5/500(Vicodin). I had been right about the amount of acetaminophen that he was being given. At two tablets every three hours he was getting 7 grams. Nearly double the four that is the maximum amount considered safe. The bag also contained 9 vials of injectionable Morphine. She just handed that bag over to me no questions asked. Morphine is a controlled substance and there are very strict federal rules regarding how it is dispensed. The prescription has to be hand written in triplicate. It can not simply be ordered by a phone call. The bag those vials were in showed the the prescription was written on Wednesday November 27th. The same day as Johnny's last chemo treatment. The day that Dr. O. was there not G. yet it was G. who had written the prescription. How when he was at one of the other clinics that day? I suspect that he had already written that prescription and when the chemo nurse called him about our conversation he was told to put the date on it and turn it into the pharmacy to be filled. I only learned that it was injectionable Morphine when I called the medical board to find out how I could get rid of it before I moved. I knew that it was a controlled substance and didn't want to transport it across the state line. When told to dump it in the toilet I tried. I could not remove the cap. That is when I saw the rubber insert and knew that it was injectionable. I took it out side and wrapped it in paper to break the vials with a hammer. Two different people at the medical board heard my story about that morphine that day and not one of them questioned the fact that it was given to me so easily. I also know that the day Johnny dumped the second treatment in the trash was also something that should have been recorded. It is stated that all waste should be recorded and two people should sign as witness. They didn't even see him dump it because no one stayed in his room. I took his things to the car and brought the car to the door while an aide helped him to the door. He was wrapped in the same blanket that he had spilled coffee on that Monday morning. That along with the coffee stained sheets were still on his bed that Friday morning. Not once during the week had his bed been made other than the several times a day that I straightened it. We were not out of the drive way before he started complaining of having trouble breathing. I asked if he wanted to go to the hospital or to his doctor. He said he wanted to go to the doctor's office. I turned into the street but he was still complaining of being short of breath so I went to the emergency room parking lot and stopped the car. Once again I asked if he wanted me to take him to his doctor or the emergency room. He said the emergency room. Even while complaining of being very short of breath he never showed any sign of the anxiety nor the agitation from earlier that morning. I drove to the door of the emergency room then went inside for help. Someone came with a wheel chair and took him inside. I assured him that I would be with him as soon as I parked the car. When I got inside I gave the information needed then went to him. By the time I got to him he already had a port in his hand. It was not hooked to an IV. He was also very nervous and very frightened. A breathing treatment was in progress and a student was standing by observing. When he saw me he told the nurse that I was the one to get the information she needed from. They needed a list of his medications. I handed her the list I had gotten from the nursing home and she copied from that. When finished she asked Johnny about his allergies. He told her Penicillin, Codeine and Ativan. She wrote them on an orange wrist band and attached it above the IV port. Once the breathing treatment was finished they started running tests. They took a urine sample and a blood test. They also had him spit in a cup so they could test the mucus. A chest ex ray was taken as well. After I was with him for a while he started to calm down. I found out that his fear came from learning that his oxygen reading was a little below 90. He was convinced that anything below 90 was life threatening. That idea came from the night that he had gone by ambulance to the hospital in July. Because his oxygen had been at 86 that night he thought if it was below 90 it was dangerous. I had learned differently. I think back now to that day and it seems that every word said to him and every thing done to him from the minute that nurse heard the fluid sounds in his lungs seemed designed to cause him harm. I know that is a terrible accusation but the things said and done from that minute until the minute that he died are just not normal things done or said in a hospital. As I continue our story you will understand what I mean. He was resting and nearly calm when the nurse came to take his vital signs again. I knew that if the oxygen reading was below 90 that his fear would once again trigger an anxiety attack. To try to head that off I asked the nurse a question and told her his fear about that reading. I told Johnny that I had heard of people who's reading was in the 60s and they were alright. The nurse stated that she had seen people with theirs in the 40s. Johnny asked how they were and she answered "I don't know they weren't breathing". That was not what I had in mind when I asked for her help and it was certainly the last thing that Johnny needed to hear. The nurses remark had upset Johnny and by the time she checked his heart it was starting to race. His oxygen was at 88 and when he saw it an anxiety attack started at once. She started to take the monitor off of him but I stopped her. I told her to leave the oxometer on his finger. I told him to watch the monitor and listen to me. I started talking to him like I had done at home. By reminding him that he was in control and to do his pursed lip breathing I got him to start to calm down. When he turned to look at me I stopped him and told him to not look at me but watch the monitor and do as I said. I coached him in the pursed lip breathing and breathed with him encouraging him to breathe and to slow down his breaths. As he did as I said he saw on the monitor that his oxygen level rose. In less than two minutes we had the attack under control and he was breathing normally with his oxygen once more in the 90s. We waited and still there was no word on what they thought his problem was. One time he used the urinal and got upset. They had removed his shirt and put a gown on him but he still had his pants on underneath the gown. While trying to hold the gown out of the way and hold the urinal he spilled it on his pants and the floor. He was very upset because of that and embarrassed because someone would have to clean it. I told him to not worry about it that it was their job. Seeing what that did to him bothered me. It kept running through my mind that he had suffered so much already why did he have to lose his dignity too. We had been there for quite a while and I had not left him for a minute. I knew that Jamie was supposed to be stopping to see him and would find us gone. I needed to let someone know where we were and what was happening. Johnny had had another breathing treatment and was breathing better. He was also calm and resting. I told him that I needed to go outside and call Johnny Ray so they would know where we were and could tell Jamie if he called looking for us. He agreed so I left him to go outside and make the calls. I have no idea what time it was when I went to make those calls. I don't recall looking at my watch and it had started to rain lightly so there is no way to judge by the light. I could probably find out by checking my old cell phone bill but I can't right now. Even something as simple as that is still very painful for me and I try to avoid it. I only know that day seemed to move in slow motion and at the same time it seems to have flown by. I made my call and went back inside to Johnny. When I got to him he had something to tell me. What he told me still puzzles me till this day. That is one of the many questions that seeing his medical records would have answered. It is only one of the questions that will torment me for the rest of my life. He said "I saw my ex ray. He told me that everything black is good and everything white is bad. I didn't see any white on it at all." At the time I thought that maybe he was just seeing what he wanted to see. Sense his death and the things that happened causing it I wonder just how right he was about what he saw. He was awake and not anxious nor had he taken any medication other than the breathing treatments. There was no reason for him to see or miss anything on that ex ray. Did he see exactly what he said that he did? While waiting the Chaplin from the rehab unit passed by and saw us there. He stopped for a minute and talked to Johnny. Before leaving he said a prayer for us. When he left Johnny thanked him for stopping and for his prayer. By that time we had been there for several hours and still had no answers. We had no idea what to expect. Johnny was still in the hospital gown and his jeans and shoes. During the afternoon his vital signs had been taken several times. Each time he was nervous and if the reading showed 90 or below he would start to have another anxiety attack. When that happened I reminded him that he had seen how it could be controlled if he calmed down. That reminder was all that he needed and again he would watch as the reading climbed into the 90s. The nurse saw as well as he did. I'm not exactly sure of the time that the nurse came to see him again. I'm pretty sure it was around four o'clock but I'm not certain. When I asked if they knew what the problem was she told me that all of the tests were inconclusive but they had decided to put him in a room and treat him for pneumonia. She also had a medicine vial and told us that she had something to give him to calm him down. We had been there for nearly 5 hours by then and during that time he had been nervous and frightened but nothing had been given to him to calm him. Why when he was finally calm and relaxed did they decide to give him something for anxiety? When I asked what she was going to give him she answered "Ativan". When we heard Ativan we both told her that he couldn't take it because he had had a reaction to it. We also pointed out that it was listed on his wrist band with his allergies. She questioned him about the reaction and when he told her he had had hallucinations she told him that hallucinations are not an allergy. He then told her "I don't care what they are I will not take that shi_ again". She left the room with the vial in her hand. A few minutes later she came back to his room and told us that a bed was ready for him upstairs and someone was coming to take him up. She also had a vial of medicine in her hand and started putting it in his IV. When I asked what it was she said "Ativan". It was too late to stop her. It was already in his veins. While she was putting the Ativan in his IV port someone closed all of the doors and the speakers announced that there was a fire drill. We were told that as soon as the drill was over Johnny would be taken to his room. The fire drill lasted five minutes or less. By the time it was over Johnny was already saying things that didn't make sense. I knew it was the Ativan and remembered the night he had taken the extra one and the problems that had caused. I knew that we had a very long night ahead of us. I just had no idea how long. When we got to the second floor they put us in a room across from the nurses station. There was little more than room for the bed and a chair. I have no doubt that it is the smallest room in the hospital. By then everyone who had come in contact with him knew of his claustrophobia and the anxiety. I know that I may seem paranoid when I wonder if putting him in that room was not by design. After the other things that I saw done to him that weekend I would believe anything possible. My other question is could his fear of being put in a small room and left alone have been a premonition of what would happen to him in that small room that night? It was apparent from the minute we got there that the room made him uncomfortable. It was also obvious that the Ativan was in full force by then. He looked around the room then at me and asked in a voice full of fear "where are we? What kind of fire house is this?" I tried to tell him that he was in a hospital room but he wouldn't hear it. He kept insisting that we were in a fire house and I tell him where it was. That went on continuously for an hour or more. One time he grabbed at my jacket and when I asked what he wanted he told me to give him a cigarette. I reminded him that he had not smoked in months and smoking with the oxygen would blow us all up. He said "then let's go outside and you can smoke and I can see where this fire house is." There was a male nurse on duty and I asked him how long we could expect him to be like that before the Ativan wore off. He told me at least eight hours. Over and over again he would ask me where he was and what kind of fire house we were in. Then he started asking me to take him home. He was almost begging me to take him home or show him where the fire house was that we were in. He would stand up and try to leave the room. He was very wobbly and disoriented but still very strong. I would stand in front of him but he was just too strong for me to handle. I had to call the nurse again and again to help me get him back into bed. Then one time he asked me to get in bed with him and snuggle. I told him that I couldn't because they wouldn't like it and would make me leave but he insisted and I still wouldn't do it. I don't know why I was so worried about what they would say. I should have lain with him and snuggled him maybe it would have calmed him for a while. Maybe he would have settled down and not have been so afraid. I could have held him again or he could have held me. I'll never understand why I didn't just do as he asked. He called Johnny Ray three times and told him that he was being held prisoner in a fire house. He begged him to come and take him home. He kept saying those things that just didn't make any sense and it was getting worse by the minute and harder for me to handle him. I was not only very tired but very afraid for him. When the nurse would take his vital signs his oxygen would be below 90 and he would again get upset. That added to what he was already going through made his fear even worse. I talked to him again and showed him that he could raise it but it was getting harder because he wouldn't set still long enough and he was still insisting on going home or outside to see what kind of fire house he was in. Still with all of that going on and after we had been told that he would be treated for pneumonia nothing was attached to the IV port in his arm. It had only been used the one time to give him the Ativan. He was also still in his pants and had his shoes on. The only medication he got while I was there were the nebulizer treatments that he received. He was never given a meal either. It was about six o'clock when the doctor on duty that night came to his room. The minute I saw him I knew that it meant more trouble. It was J. the one who had harassed him in July because he wouldn't sign a DNR. He came to Johnny's room that night with one intention and that was not to check him. The first thing he said was "I see that you didn't fill out the advanced directive or the DNR." Johnny told him "no I didn't. I came to the hospital to live not to die. I want everything done to save me." That was not the answer that J. wanted. He kept on at Johnny to sign a DNR. Still Johnny refused. That is when that so called doctor went into a tirade. He was almost shouting as he used the same speech that I had heard in July word for word. At the end he would add one more line. He said " I find it hard when someone has lung cancer to jump on their chest, break two or three ribs just to bring them back and put them on a respirator when they are going to die of cancer anyway. I find that inhumane and I won't do it. If you don't sign that paper I won't treat you." For two hours Johnny had been battling the effects of that Ativan but when he heard those words he looked J. right in the face and in the calmest of voices said "I don't want you to treat me. You are not my doctor. Dr.O.is". I then told him that he had his answer and asked if there were another doctor in the hospital that night. I was told yes and then he left. Johnny was upset by his words but determined that he would not change his mind and believed that because Dr.O. had agreed to be his doctor that he would not have to see any other again. Still when J. left he started again asking me then almost begging me to take him home. I was tired and scared and saw a long night ahead of us. It was getting harder and harder for me to control him. He was just so strong that when he got out of bed and tried to leave that I was unable to hold him back without assistance. I needed time to calm myself and something to eat. Neither of us had eaten sense breakfast that morning. I assumed that they would bring a tray for Johnny so I decided that I would leave him for a while and go get me something to eat. I needed time to think and get my nerves calm and food to nourish me for what I knew would still be a very long night. When I left the room I saw J. at the desk. He was signing something. I thought he was giving information for the other doctor that was there. I had no idea that he was signing the paper that would send Johnny to his death. Quote Link to comment Share on other sites More sharing options...
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