lilyjohn Posted November 25, 2004 Share Posted November 25, 2004 I woke early Thanksgiving day. I wanted to get to Johnny as early as possible to spend most of the day with him. Before I left home I had something else I wanted to do. I had my coffee and checked my email and just relaxed for a few minutes. I wanted to call my children but I knew because of the time change they would already be gone to their uncle's house for Thanksgiving dinner. I would call them later I had to do what I planned and leave for the nursing home. I gave Misty her bath. It was time for her to visit Johnny. By the time Misty had both her morning walk and her bath it was after eight. We got to the nursing home around eight thirty and he was waiting. I'm not sure who he was happier to see me or Misty. He loved his little dog so much. For eight years she had been his companion and many days the only company that he had. He called her his "little camping buddy". He had already had breakfast by the time we got there but was ready for more coffee. I got us each another cup of coffee and we just talked for a while. We talked about going to CTCA in Seattle the next week and we talked about him going home the next day. Again he told me that he felt better and stronger than he had in months. He looked so good that morning. He was happy and calm with no sign of the anxiety that had plagued him for the past two months. I wasn't even worried about the Vicodin that morning. I new that when we got to the new treatment center that they would work on both the anxiety and the dependence on the Vicodin. He looked and sounded so well that I was determined to enjoy our day together and forget his illness for a while. It was a little after nine when the nurse came to his room with something new. She told me that they were going to try him on a new nebulizer treatment to help the anxiety. When I asked what it was she told me it was Morphine. She took the cup for the nebulizer out of the drawer by his bed. He would put it there because it was still attached to the machine and he didn't want it to fall in the floor. Usually it still had a little of the last duo neb treatment still in the cup. I don't remember if she had to pour some out or not. At the time it just didn't seem important. She put the morphine solution in the cup and handed it to Johnny then she left the room. He did that the same as he did all of the nebulizer treatments. He turned the machine on and took a few breaths for about two or three minutes then turned it off. It took him nearly a half hour to finish the treatment and still there was a small amount left in the cup. When he put it back in the drawer he told me that he was not going to take it again. He said "It makes me feel strange and gives me a headache". Later she came with his regular nebulizer treatment of duo neb( a combination of Albuteral and Atrovent). I called my children from his room. There were no rules there against the cell phone being used. We had the tape of guitar music playing low in the back ground. The first time that he had heard it he loved it and we played it several times a day. I took Misty out for a walk and when I got back he asked if we could go for a ride later that afternoon. He wanted to see his grandchildren and tell them Happy Thanksgiving. I agreed to take him if it was approved by his nurse. When he asked her she said "yes" as long as we were back in time for his evening medications. About eleven o'clock he told me that he had to use the bathroom. He had not had another bowel movement after the one Sunday morning at the hospital. He had been eating much more and taking a laxative. It was starting to work. The bathroom was only about four feet from his bed but he didn't want to go in there. There was a porta potty there and he asked me to bring it out by his bed and close the curtains. I did as he asked and took Misty with me to stand outside the door in the hall. It was not long before he told me that he was in trouble. He had to go but couldn't. He stayed for a while and still had no luck. About that time the nurse came to his room. When she learned the problem she put on a pair of gloves and helped him. She placed the porta potty back in the bathroom. He was very relieved and told me that he would not refuse the stool softeners again. He also said that he was ready for his Thanksgiving dinner because he was very hungry. Not long after he used the potty I started to notice that he was coughing. It bothered me because he had really not coughed much in months. The cough also sounded very loose. Soon he was spitting up mucus. Something else he had not done in months. I found the nurse and told her that I was concerned because all of a sudden he was coughing and his voice was starting to get raspy. I asked if it could be from the Morphine and she said it could be. She suggested that the Morphine could have relaxed both the lungs and the air ways and that was why he was coughing. It never occurred to me to ask if that could start to produce mucus again. Johnny decided that he wanted us to have our dinner in his room. If we went to the dinning room I would have had to put Misty in the car and he wanted her to stay with us. He also said that he wanted us to have our first Thanksgiving dinner together alone. I was willing to do anything that he wanted. I had offered to help in the dinning room if they needed someone but no one had ever asked me. I was glad that they hadn't because we could take our time and plan for his homecoming the next day. We had a pleasant meal and he ate everything including my sweet potatoes. That is he ate everything except the bites he kept sneaking to Misty when he thought I wasn't looking. When I caught him he just laughed and said "She needs her Thanksgiving dinner too." Later one of the aides brought a plate for Misty. She had bread and sweet potatoes. What she didn't know was that Misty is very particular. If it is not meat or cookies she doesn't eat it. When she saw the dish she ran to it took one sniff then jumped back upon the bed with Johnny. We had our coffee after dinner and desert and just relaxed for a while. Once more Johnny told me how much better he was feeling. He looked it too but that cough was getting worse and it worried me. When I mentioned it to him he told me that he didn't know why I was so worried. He said that it didn't bother him at all. He still felt great. After one the nurse came with another dose of Morphine for the nebulizer. Again we were told it was for the anxiety. Johnny told her that he didn't feel anxious at all and he would not take the Morphine. He also told her the same thing he had told me earlier. That it made him feel strange and gave him a headache.She took the cup out of the drawer and put the Morphine in the cup. She handed it to him and told him that he should at least try it then turned on the machine and left the room. After she left Johnny turned the nebulizer off and dumped the Morphine in the trash basket. It must have been around two thirty when we left for our drive. I brought the car to the back door and one of the aides helped him into the car. He only needed help with the oxygen bottle. It was a small portable one but a little bigger than the one we had at home. It was also shaped different and Johnny found it awkward to handle. Our first stop was our apartment. I wanted to drop Misty at home and Johnny wanted some things from our apartment. He wanted his own oxygen because it was easier to handle and also because it had the metered flow that only gave out the oxygen when he took a breath. He set that one at two liters. The one from the nursing home was set at three liters like the concentrator was. He also wanted his combivent inhaler in case he would have an attack and his urinal. Those things were just insurance and he told me that he doubted that he would need them but wanted them with him just in case. We were only about a mile from our house when he started coughing. Again he was spitting up mucus. He used the last tissue we had in the car and told me that we would need to stop and get some more. A little ways further he had another coughing fit and I pulled over to the side of the road. Sense he had no tissues he rolled the window down to spit out. He didn't spit far enough and some went on the side of the car. It upset him and he said that he was sorry and it was "so disgusting". I told him not to worry about it that I would clean it later. There was a small grocery store about half way to his son's house. I stopped there and he gave me money to buy his lotto tickets, candy bars for the children and a box of tissue. When I got to the car I took one of the tissues to clean the side of the car. He was bothered because I had to clean it and again said it was disgusting. I was bothered because I saw that the mucus was a very pale green. When we got to his son's they all came out to the car. I got out but Johnny sat in the car. He was in the greatest mood laughing and teasing. He was telling them about me finding the new treatment center and that he would be going there the following week. Earlier in the day his son Tom had called from his in-laws to check on Johnny and wish us a happy Thanksgiving. Johnny had asked him about the location of the treatment center. When he learned that it was in one of the better parts of Seattle his hope that he had been holding in check spilled out. He was so excited about going there and was telling his son that he felt like once there he would start to get well again. All of the thoughts from the day before that had caused me to talk him into staying in the nursing home until Friday were gone. He was so happy and seeing him so happy and so sure and optimistic again made me happy. That's all I had ever really wanted was for him to be happy. That is why I had gotten so upset with his kids for not paying more attention to him. It hurt him and he needed them to be happy. Seeing him that day so full of life and so full of hope again is such a bitter sweet memory. Thanksgiving day had started out very foggy and the fog had not lifted until well past noon. While we were talking with his son and daughter-in-law I noticed that the fog was starting to settle in again. I told Johnny that it was time to go and he agreed. Valerie fixed me a plate from her dinner to take with us. Johnny told her that he would just eat something light when we got back to the nursing home. He said that he had such a big dinner that he was still full. Once I had my plate we left. I didn't like driving in the fog any more than I had to but mostly I didn't want to have Johnny out too long in the damp air. I was getting very worried about his cough. On the way back we were talking about our visit and going home the next day when Johnny started coughing again. I said " I sure don't like that cough. It is starting to worry me." His reply was "you worry too much. I feel great it doesn't bother me at all. Don't talk about it any more you talk too much. I sure hope your talking doesn't break us up." I don't even remember how I answered him. I had mixed feelings about what he said. I knew that he was just trying to get me to stop mentioning the cough. Whenever I talked about anything that he didn't want to think about he would tell me that I talked too much. I also knew how much he loved me and that he needed me. He said that about my talking breaking us up because he wanted my mind on something else. As he had said that Wednesday morning at home. "We are just too much alike. Sometimes words are better left unsaid." I believe too that words are sometimes just not needed because we both knew what the other was thinking and how we would react. It was nearly dark by the time we got back to the nursing home but Johnny was still going strong. He was just so wound up that he could hardly keep still. He asked for my cell phone and started making phone calls. We called his sister Irene in California and then my niece Jacci. We both talked to Jacci and her mom. He was telling everyone how much better he felt and that he was going home the next day then to Seattle the following week. He made sure they all knew that he expected to be cured. Between phone calls he asked me to go find the nurse and ask her if they could get me something to sleep on. He said "it has been such a great day that I don't want it to end. I want you to spend the night with me. I want you here with me." I have to admit that I was really not thrilled with the idea of spending the night there. I hadn't been sleeping that well with him gone and knew that I would not sleep well if I stayed there. I was worried about that cough and would be jumping up at every sound he made. I knew also that the next day would be tiring. Checking him out and getting him and all of his things home would take both time and energy. The following week would be filled with preparation for going to Seattle. I was already tired but because it seemed so important to him I agreed to stay if they had something for me to sleep on. I looked for the nurse but she was not at the nurses station. I went back to his room and told him that I would ask when she came around later. It had been nearly a half hour and still I hadn't seen her when we called his niece Pam. He talked to her for a while then gave the phone to me. I was talking to her when he got off the bed and headed for the door. Just as I jumped to go to him he swayed a little and I called out to him. He straightened himself and told me not to worry that he was very strong and he was going to find the nurse himself. He said he wanted me to stay with him and he was tired of waiting to ask. He went out into the hall but didn't see her. He came back disappointed but very proud of himself. It had been over a month sense he had walked further than from our bedroom to his chair in the living room. A distance of a little over ten feet. On those occasions he had always had to have the oxygen turned up and the nebulizer ready. He required neither of those things that night. It had also been over a week sense he had walked at all. The furthest he had gone was from his bed to the chair on the side of the bed or the wheel chair if he wanted to go somewhere else. He walked further that night than he had in weeks and had no attack at all. Other than that one small sway he walked as strong and fast as he always had. He was so proud to show me that he could do that and again reminded me that he felt stronger than he had in weeks. Still he had that cough. I went into the bathroom several times that day. Each time I smelled the porta potty. When we got back from his son's house it was still in the bathroom not emptied. When a new aide came to his room after the shifts changed at eight o'clock I told him about it and he emptied it. He was very angry about having it left for him. I'm not sure if it had to be measured or not but he did take it away in a plastic bag. The cough continued all evening and the raspy voice got worse. Every time I voiced my concern to Johnny he brushed it off. He kept insisting that he felt better than he had in months and that the cough was just an annoyance and didn't really bother him. I had one of the aides warm the dinner I had gotten from Valerie in the microwave. By the time his supper got to him Johnny was hungry again and ate it all with a banana afterward for dessert. He had gone all that day without one anxiety attack. He had walked for the first time in over a week. We had gone out in the car and he had put up with that cough. Not once did he complain of being short of breath nor did he act anxious or complain of any pain. He not only said that he felt better than he had in months he looked better and his actions said that he was better. When his nurse came at eight o'clock to give him his evening medication he finally got to ask her about a place for me to sleep. She told him that there was no place and if I stayed I would have to sleep in the chair that I was sitting in. That chair had a straight back and no leg rest. Johnny told me that he knew that I couldn't stay and sleep in that chair because it would be too hard on me. He told me that I could just stay as late as possible then go home and get a good night's rest so I could be there early the next day to take him home. He said then we could be together again and snuggle. Not long after he took his medication he started getting sleepy. Before he fell asleep he called me to his side and told me that he would be going to sleep and I was tired. He said there was no reason for me to stay once he fell asleep so I should go home and get a good night's sleep and be back early the next morning to take him home. He kissed me good night and I left for home. I drove home in the fog taking the long way through town. When I got home I took Misty out for her walk then got on the computer. There was no one to talk to. Everyone was either still enjoying their holiday or home recuperating from it. I played solitaire for a while hoping to get sleepy. I was just too keyed up to relax. I had so many things on my mind. I sat up and played that game until near midnight. The last thing I did before going to bed was call and check on Johnny. The night nurse assured me that he was fine. He had been awake for a while and they had been talking but Johnny was sleeping again. I mentioned the cough and as always reminded him that if Johnny needed me for any reason to be sure and call me. Once in bed I still couldn't sleep. I was thinking about getting his medical records and the drive to Seattle that I was dreading. I was still worried about his cough too. It had been the best day that we had shared in weeks. I knew that the reason that he was looking and feeling so much better was because he had found hope again. I had seen what had started the anxiety and how quickly things had gotten out of hand. Now just as quickly they had reversed and I knew the reason for that as well. Even worried about that cough I was sure that God had answered my prayer and soon Johnny would start a new treatment and counseling and be doing as well as he had before that nurse had made that damaging remark. I thought about the Morphine and wondered again if it was responsible for the cough. Johnny had been fine before that first treatment with it and the cough had started less than two hours later. I was also wondering why they had started it that day. The first day in two months that he had not had a problem with anxiety. It must have been around one in the morning or after by the time I finally fell asleep. The last thing I remember thinking was that the next night Johnny would be home with me and we would again sleep snuggled in each other's arms. I've never found out for sure what caused that cough and the fluid sounds in his lungs. There never was a definite diagnoses either. I believed right from the start that the Morphine was responsible. Sense his death I have researched every drug that he was given time and time again. I have learned some very interesting and disturbing facts. Nebulized Morphine has just been used for a few years. There are mixed feelings about the advantages of using it. It is prescribed to relieve shortness of breath not anxiety tho I can see where that would be a side effect if it works. I also read that it is not recommended for use because not only is there little evidence that it does any real good but the side effects can be dangerous and outweigh the advantages. There is also evidence that todays technology has not produced a nebulizer capable of delivering it to the lungs in such a way to cause relief and not serious complications. If nebulized morphine is used there is a very exact protocol that is to be followed. The medication must be obtained and put into the cup by a nurse. The cup must have been well washed and the treatment administered by a licensed respiratory therapist. Before it is given the patient's vital signs should be taken and again after the treatment is finished. The patient is also supposed to be questioned about his reaction to it and any comments recorded in his records. The cup is then to be removed, washed and put in a plastic bag ready for the next use. Not one of those procedures were followed with Johnny. It was also administered by a small portable nebulizer not a gas jet set at 6 liters as required. The Remeron that he was getting at a double the normal starting dose for a healthy younger person warns that it can cause flu like symptoms after seven days. It also warns about giving it with Morphine because it can be dangerous. Morphine warns about giving it with Atrovent because it can produce very dangerous side effects. It was given to Johnny not only while taking the Atrovent but in the same unwashed cup. There is also a warning that states that if a person has had an allergic reaction to any opioid that careful thought should be given before administering morphine and that the person should be closely monitored. The chemo that he was taking at that time was Navelbine. That also warns that it can cause flu like symptoms. The benadryl given before chemo warns against giving it with Morphine. Not only was Johnny getting a lot of medications that should have been watched for serious side effects but he was getting a very dangerous mix of them all. Any or all of those things could have been responsible for the cough and fluid sounds in his lungs. Quote Link to comment Share on other sites More sharing options...
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