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birdlady 
10:26pm, January 12, 2009
I just got done writting alot about my past couple weeks concerning my husbands ailing health. But I wrote it under updates or something else. So I hope everyone will be able to read it. Because I really need extra prayers for me to keep my strength. God Bless everyone. One of the things that get me through really rough days is this: I tell myself that even though this is extremely hard there is always someone else that has it worse and I start to think about others and praying for them. Thank you, Ramona-birdlady8170
UPDATED GOALS
Being strong for family
Progress 60%
Encouragements: 2
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These past couple weeks have been horrible for me. Three or so weeks ago my husband called me from the nursing home where he has to live and told me he was having chest pain and it was hard for him to breathe. I told him to tell his nurse. When we hung up I called the nursing home and told them what was going on. I told them how his health deterated in the past when he had these symptoms. And told them that I wanted them to get him to the hospital and I was on my way. I was told the his nurse was going to give him a breathing treatment. When I got up there 20 minutes later: a 2 mile walk; he was laying in his bed and there was some bread laying in his wheelchair. I asked him what all they had done to help him. He told me that all they have done is give him the bread to nibble on to see if that would help with the chest pain. I went out to the nurses station to see what was going on. They told me that because he had not needed any breathing treatments in awhile it was taken off his medication list. Even as PRN. And they told me that the ambulance would be here in about 1 hour. I was upset and went back to my husbands room. I cooled down and went back out there and asked them why it was going to take so long for an ambulance. They told me that they were using a private ambulance service. I was still very upset but went back to my husband. He then told me that it was getting harder for him to breathe. I went back out to the nurses station and told his nurse. I was told that the ambulance was on the way. I told them that he needs to be seen. One of the other nurses; that is also one of his nurses on some shifts went and got the blood pressure monitor and oxygen meeter. His oxygen was going down into the 80's. She then got his other nurse and told him that they need to start him on oxygen and hurry this up and dialed 911. the ambulance was there in less then 5 minutes. While he was in the hospital we found out that alot of the pain he has been in is from his gall bladder. But they said that is didnt need to come out. He was in the hospital for around a week. When he came home; back to the nursing home, his medications were messed up some and he had to wait for regular PRN's. Over the next two weeks he was continuously in pain and often severe pain. He still had not been able to keep very much of what he would eat down. So that made close to six weeks of vomiting several times a day. Two Fridays ago I was called by his van driver; for appointments, and was told that he has just taken Ron to the hospital because he was in to much pain to continue his dialysis treatment. But he was okay and not in critical condition. I told him that I would be up there after I got our son on the school bus and got a shower. Needless to say; after the many tests, his gall bladder is in fact bad. but not with gall stones. The way it excretes bile is not working. Plus we were told that the lumbar section of his back; lower back; and the vertibrates 1,2,3,4,and 5 are degenerating and some of those have buldging discs. So that is why he is having so much back pain. He went into the hospital on Friday morning. During the middle of that night his breathing became labored and his oxygen level dropped into the 30's. So he had to be placed on a BPac. It pushes oxygen into the lungs so he is not having to work so hard. It is not a resperator. The third time his oxygen went down extremely low he was placed in ICU. He is now back to the nurses station. He is doing both physical and occupational therapy on his back, arms, and legs. However he has to do most of these laying down because he is so weak. Since he has been so sick for several months he has lost all body fat, and almost all muscle. He is having problems lifting his right arm shoulder level. Therefore making it hard for him to feed himself. His left knee often wants to give out if he is walking. So during therapy when they have him walk using the bars, he has to wear a knee support. Four nights ago his nursing home doctor; whom neither one of us likes and thankfully we got switched to another one today, started him on Risperdol to help him sleep. Well it did that. He slept so soundly that at 2 a.m. he fell out of bed exteremly hard. I was not called and notified about this. Ron called me when he got back from dialysis and told me that he had fallen out of bed and that his hand might be broken. I told him that i was on my way. When I got there I asked them why I was not called. They told me that they were getting ready to when I showed up. Again I was very upset. His hand was x-rayed there and the next day we were told that the xray came up that there was no break. Today we met with his new doctor and as we were going over his health history and current medical conditions, he throughly looked at the hand/wrist, moving it and such. He said that he is going to order a MRI of his hand because a xray wont show small fractures around the wrist because there are so many small bones. So we feel that he agrees with us in thinking that it is broke. And when he was going over his medications with us; he asked us who put him on risperdal. We told him that his doctor here did. He told us that he can not be on that because it is only for pschotic behaviors. And that he never should have been given that Rx. So we are hopeful that with this new doctor, many of my husband's concerns and issues will get better. The bummer of all of this is that Yes his gall bladder needs to come out because it is making him sick. But he can not have the surgery until he gets stronger. But we are wondering how he is going to get stronger if he is so sick and vomiting often. But with the proper medications and lots of popcycles he is able to keep more of his food down. My husband weighed 138 in May of this year. And when he was in the hospital earlier this week he was down to 106. We are hoping he doesnt loose any more weight. I had a severe anxioty attack last Saturday and after getting a pack of cigs and smoke one, i was able to calm myself down but felt like I was in shock for close to three hours. I had thought that because I have been mentally preparing myself and knowing that all of this is killing my husband and will probably take him before I am ready, But in all actuality; I AM NOT READY!!!!!! I have realized that the death of a loved one is something that you can prepare yourself for. But you are never ready to accept it. If anyone reads this and I know it is long; I would really apprecate any and all prayers not only for my husbands comfort but for myself and our families. Thank you, Ramona
birdlady
I went to dialysis with my husband this past Wednesday. For me; yes it was a very long 4 hours while I waited in the waiting area. I had gotten up at 4 in the morning to be at his nursing home by 5:15. I rode with him to his appointment. I was glad that I went to this appointment because they had came out and told me that his hemoglobin was 7.5. They had scheduled him for a transfusion the next morning at the hospital. They also ordered for his bowels to be tested for blood. The next morning was also an early one for me. I once again walked to two miles to his nursing home so I could ride with him to the hospital. We were not informed of how long this was going to take. However the nurse he had was very patient with us and very nice and was just very good and caring at her job. She told us that he was to receive two units of blood and brought us the neccisary paperwork for signatures and information on the procedure. She also said that it normally takes 1 1/2 - 2 hours for each unit of blood. But since he had had congestive heart failure earlier this year she was going to run the blood slower so it would not be as hard on his heart. When he was sleeping and I had pushed his call light to notify her that I noticed he was showing signs of sleep apnea and I would like to check his oxygen level. She did with no questions. His oxygen level was at 84. She asked him to take some deep breaths, and if he was having difficulites breathing. He told her no that he felt fine. She hooked him up with oxygen and asked if there was anything else we needed while she was here. She was in his room like every half hour throughout the entire ordeal. But this is something else that we are going to have to get adjusted to; is him having to have transfusions every so often. We keep wondering when things are going to get better for him. He does have some good days. But lately it has seemed he has had more bad days then good. We did find out that when he fell out of his bed in the middle of the night that his wrist was not broken. Just a very bad sprain. Which is good and bad. Good because he does not have to be in a cast. The bad is that the wrist that he sprained is the one that he has his fistula in. The lower area where they put one of the needles for dialysis is extremely close to his wrist. And when he is dialized it agrivates his sprain. The other day his wrist was so sore he was in constant pain all day. He got one darvoset pill and his pain level was still at 10. I was raising all kinds of hell with the staff telling them that there is something that they better do to help control his pain or I was going to take him to the hospital. The occupational therapist came down to his room and took his brace off to look at it. His wrist was extremely swollen in two parts. His hand was so bad that the knuckles on his hand were had to identify. She took use down to the therapy room and got cold/ice pacts to numb his hand and wrist. By this time the pain was traveling to his elbow and above. I went back to the nursing staff to see if it was time for his pain pill again. Now earlier that day I had went to the executive director and raised hell with him because when my husbands doctor was in almost two weeks earlier he had ordered a pain patch with the darovcet as prn. And as of yet he has still not gotten it. And I wanted to know why. I told him that every time I asked one of his nursed about his pain they told me that they can only give him what is ordered by his dr. I bring up the patch and they tell me that they dont have it. The executive director got the head of nursing in his office to find put my husbands file and see what was going on. When she brought it into the office and said that yes this patch was ordered almost two weeks ago, and that she would get ahold of their pharmacy to see what was going on. They told us that it was a pharmacy error and they were putting a rush on it, and that he would have it within 4 hours. While he was getting his wrist iced down and I went back to the nurses station to see about a pain pill. They told me that yes it would be time for another one but because they had a call into the doctor to either get something stronger, or have his dosage bumped upto two, he would have to wait for the doctor to call back. Needless to see, I was not in a very good mood and I was ashmed and apologized later for being so rude to his nurses. After close to 30-40 minutes of his wrist and arm being on ice he had to use the restroom and go out for a smoke. His arm was feeling alittle better since most all the swelling was down. When we went back to the therapy room he told them that it felt better with the ice off because the cold was making it hurt in a differant way. They said as long as he keep his brace on and kept it elevated it should be ok. He got two darvocets soon after that. And his pain patch came in and we were told that 3rd shift is in charge of the patches. And he will get his in the morning, and that the darvocets should keep the pain at bay. Then when I was able to calm down the nursing director and his therapy nurse and I decused with Ron about dialysis. And the fact that something needed to be done about them not using his fistula and let his sprain heal up some more because the after effects of using his fistula is to much on my husband. It was agreed that his doctor would have to write an order. I told them that I will be going to dialysis with him in the morning. When we got to dialysis and his nurse came out to get him I told her what was discussed about his wrist the day before. I told her that they needed to use his port, and not use his fistula for a week. She told me that he really needs to use his fistula because he gets a better dialysis, he really should be getting his port taken out because he is in risk of infection. Which I know would be very serious if that happened. I looked at her with a not so nice look and asked her; knowing already the answer; and asked her, cant he refuse to use his fistula. She gave me kinda the same look back because she know that conferstion was not going the way she wanted it to go. She told me that yes he can refuse to use his fistula and it is his body. I told her that they have used his port this long; since May, and have just recently within the past 4-6 weeks just began using his fistula. And some times they can only get one of them working and still have to use his port. So one more week isn't going to hurt. And that the way his wrist looked yesterday and the amount of pain he was in was actually putting me into an anxioty attack. And that his wrist has got to heal. They went back and a differant nurse came out and told me that he was all hooked up and they were infact using his port and everything was going well. Then they came out and told me that he needed a blood transfusion the next day. Today when my ex-husband came to pick me up so my 10 yr. son and I can spend the weekend at my ex's house to be with my other kids he said that he had to bring his mothers car because his muffler was coming off his. My husband said if you have grandma's car, my wheelchair will fit in it. Hinting around that he would also like to come. My ex-husband said yes that he can come as well to his house and spend time with the kids. See when he first went into the nursing home he was Medicaid pending. With no other insurance. He was approved for Medicare and then his Medicaid went through. I told his nurse that I was kidnapping my husband for the weekend and needed his medications. What I was saying was that we were told that when his Medicaid went through he would be allowed like 14 nights away per year, and that was what Medicaid would allow. We were told that he would need his doctors written approval for him to be allowed to leave. The problem was that his doctor was out of the office until 2. And my ex-husband had to be back in Goshen by 2:10. We are in Ft. Wayne, so that is over a hour drive. So we agreed to just schedule it for next weekend. See, my husband has not been out of the nursing home for more than an average of 1/2 hours since May. One occasion I had him out for 6 hours for a parade, ect. and another time he was out for several hours. But he has not had a real shower or bath since he was admitted to the hospital on May 5th. When we were getting ready to leave his nurse caught me in the hallway down from his room and told me that the executive director told them that his Medicare does not allow over night stays. If he was to stay out past midnight, he would lose his medicare benefits. So even though Medicaid allows overnight stays, Medicare does not. I was told that they feel that if you are ok enough to stay away from the nursing home over night then you don't need to be there. I told his nurse that she would have to tell him, that I will not tell him that when he was so excited about being able to get out and spend time with the family outside of the nursing home. I also told her to keep a watch on him because he is already depressed about not being able to go tonight. Even if my ex could have stayed longer, we were told that his doctor would not have allowed him to stay out because he had just had a transfusion yesterday and still needs to be monitored for any reactions. On our way out I gave his nurse my ex-husbands phone number and told her that if there were any problems; of any kind, to call and I would be on my way back. So as I have said it just seems like there is always something going wrong. Whether it be his health declining and needing to be in the hospital, or news of this kind. My husband has stated matter of factly that as soon as his social security goes though he will be out of the nursing home as soon as we can cash the check and get his dialysis transferred. It didnt matter if we had to rent a motel room until we found us an apartment. My son and I were able to move out of the transitional shelter close to a month and into a friends' house. We were able to bring a friend with us; who is also my sons' babysitter. But the news with this is that he keeps trying to get both of us; at differant times, to "PLAY HOUSE" with him. He keeps trying to get us to go to bed with him. He knows that I am married and that doesn't seem to bother him. I have told him many times NO. My friend told me that he fondled her the other day and when she told him no that she didnt want him to do that, he told her to come in his bedroom with him and play house. She told him that she didnt want to, and that she needed to check on my son. He was home sick from school that day and I was up with my husband. She told me today that he told her that Jimmy told her that one of these nights he wants to move my son out of the bedroom that him and I share and put him into the living room to sleep. Then he would go back in there and do things to wake me up. She told him that that is rape and he cant do that. He told her that I wouldnt do anything to him because i would want it, so it would be ok. I told my ex-husband about this; as we are better friends then when we were married and help each other out. He told me that I need to get out and find another place to stay as soon as I can. And if he tries anything to make sure I report him and do whatever I have to to get away from him. I am going to get ahold of my case worker on Monday and tell her what is going on and see what she can do to help us out. I thought I was doing a good thing when we moved out of the shelter because it was so hard on both of us. And my son was showing signs of his depression again. He doesnt know what is going on because he is only 10 and sticks up for his "uncle" jimmy. becuase he is a friend and is letting us live in his house. I have not told my husband what is going on at the house because there is not anything he could do to help and I dont want to worry him. Plus I guess Jimmy told my friend that she was suppost to pay $150.00-$200.00 a month for rent. But if she didn't have the money she could pay it by playing house. When she told me that I told her that when we moved in he told me that he would like it if both her and I would pay $100.00 a month to help pay some of the bills, and to just keep the house cleaned up. Which we do. So I am just taking it day by day and hoping that tomarrow is better then the day before. And sooner or later, everything is going to be okay for us sooner than we hope. God Bless Everyone.
birdlady
Oh my! No wonder we haven't heard from you in a while. You certainly have more than your share of troubles. My husband has his good and bad days but, what you've been through kind of puts my hubby to shame. We all have our own form of suffering to go through, our own crosses to bear. We just have to learn how to carry them. Prayers for all of you.
Brenda
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