kaykay Posted October 5, 2007 Author Share Posted October 5, 2007 survive what does it mean to survive ? to be as was before the stroke? or to be able to breath on his own and stay in a coma ? to come out a coma and not be able to do anything? i dont understand the word survive the doctors told me my father would not survive buts it been a little over two weeks since my father had the stroke and is still on a vent and coma is that surviving? I hate going to the hospital and seeing my father in that way because i feel like i am making him suffer then again if i pull the plug i will feel like i am killing my father. i have notice no change at all with my father is this norm ? im still would like to hear from people who had brainstem bleeds if any please. Link to comment Share on other sites More sharing options...
bstockman Posted October 5, 2007 Share Posted October 5, 2007 Sweetie, We don't know how it will turn out for your dad, No one can. With brain injury.. it is wait and see.. or take him off life support. There is a severe brain injury. Once the blood is absorbed .. it all depends on what area has damaged. what those brain cells control If he wakes up enough to participate in HARD WORK and a lot of Rehab. He may need to learn to walk .. or talk or swallow. He may have paralysis, He might not be able to talk or read. Go back to page one of this post.. Lin is a Survivor of a brain stem stroke. Steve the man who started this site is a survivor of a brain stem stroke.. I know a couple other have answered you also. We do not know.. how much damage, what he will or will not get back. The Dr's don't really know either. With brain damage it is all about what areas come back and what is actually damaged and can be re-learned It will not be easy on anyone. Your father is not going to suddenly wake up and walk out of the hospital.. He will need to go to a place that has Rehab. and work VERY hard. He may never be able to live by himself. He may need someone to help him care for himself for a Long time.. or permenantly. Your dad is not going to be the very same dad he was.. there will be a lot of changes.. what they will be or to what extent... ???? Try to read all you can on brain stem strokes. Many have suggested calling your Uncle.. they may not have been close lately, but he is his brother and may be able to at least help you with some of the decisions and some moral support. Did he have a close friend? someone you can talk to or go to the hospital with you? I know as the days go by without any improvement it is getting harder and harder to see him like this. Can you ask for another neurologist to come in and talk with you. Get a second or third opinion... I wish I could help more.. but we don't have the answers to how your dad will be.. or to what extent the damage will be .. We will help you all we can, and make suggestions, and are here to send you hugs. and answer the best we can. Link to comment Share on other sites More sharing options...
mikisteph Posted October 5, 2007 Share Posted October 5, 2007 Hi Kay, There are very few survivors of brain stem bleeds, most of the ones you come accross are survivors of ischemic strokes not heammorhagic. I was a patient at Adan Hospital in Kuwait although i should think the principles of treatment are pretty standard. Mike Link to comment Share on other sites More sharing options...
ksaul Posted October 5, 2007 Share Posted October 5, 2007 kaykay there is nothing i can add to the advice and information you have received. i just want you to know that you and your dad are in my thoughts. you are doing your best - there are so many unkowns and that is one of the hardest things to do - wait and see. many hugs to you. kathy Link to comment Share on other sites More sharing options...
Guest lwisman Posted October 5, 2007 Share Posted October 5, 2007 I had a brainstem hemorrhage at 46. One statistic I read was that 90% of brainstem stroke patients die in the first month. He has already made it over the hurdle of the first month. My family was talked to about organ donation and here I am ten years later using all those organs myself. I was not able to return to work. I walk with a cart. I still have a number of physical problems. But, I am able to volunteer and as you can see my brain is still working well and I can use the computer without a problem. I was only in a coma for 2 weeks, but I remember nothing for the first 2 1/2 months. I am told that during that time I became more and more able to converse with people. But, I don't remember any of it. I was in hospitals for 4 months and 3 weeks, the last 7 in a rehab hospital. Then I was in outpatient therapy 3 days a week for 8 months. It took a lot of time and hard work. No one can say what your Dad's outcome will be. All you can do at this point is to encourage him, and be an advocate for him. Talk to the medical staff about rehab. Look forward to the day he will be able to actively participate. Good luck to you. Link to comment Share on other sites More sharing options...
kaykay Posted October 6, 2007 Author Share Posted October 6, 2007 Mad!!! i went to the hospital today like always to see my dad only for me to come in the room and see him look like he has not been touched all day like no one gave him a bath or changed his gown. i ask the nurse why my father looked the way he did she had nothing to say. the tech told me that i need to clean my father my self then. i mean my father looked so bad i wanted to go to the media i wanted to take a picture of him and take them to court. i felt like taking my father off life support becuase i felt like im making him suffer. the nurses kept telling me i was wrong and i should not have got mad and went off the way i did . its more but to mad to tell story right now :Tantrum: Link to comment Share on other sites More sharing options...
Jen B Posted October 6, 2007 Share Posted October 6, 2007 Kay, I've been following the posts on your father and your situation. My husband had a brainstem stroke (clot) 14 months ago at age 38 (I was 30). Like other families here on this site, I was also told he wouldn't survive. The doctors told me (and have reiterated) that they haven't seen a clot the size of his before. Bottom line is that he survived. He is currently considered "locked-in" but we are seeing improvements and are very encouraged by them. I could go on and on but I won't. Instead I want to address what you experienced today at the hospital. Fortunately, I was able to stay at the hospital with my husband the whole time he was there (6 months). I had problems with nurses and techs too. You should probably talk to the charge nurse/nursing supervisor. They need to know that you feel like your father isn't receiving the care he should. Tell his doctor/neurologist too. You should get answers from the nurses as to what they did for your father during the day. Is there anyone - friend, extended family, anyone - that can "check in" during the day to make sure he is receiving the care he needs? Hang in there. I feel for you having to go through this by yourself. A lot of people are following your story on this website. I pray for you. Jen Link to comment Share on other sites More sharing options...
Guest lwisman Posted October 6, 2007 Share Posted October 6, 2007 Jen has some very good points. In medical situations (hospitals, nursing homes for example) it is often the squeaky wheel that gets greased. The staff is very busy and in order to move further up the list of those they give the most attention to, someone in the family has to be an advocate. If they know you are watching they will work harder for your Dad. Also, ask what you can do to help. When they see that you want to be part of the care team often they respond better. Link to comment Share on other sites More sharing options...
Mema Posted October 6, 2007 Share Posted October 6, 2007 Kay, I'm sorry you are having to deal with such a traumatic event, but it appears you are doing a great job for someone so young. Your Dad is lucky to have you in his corner. When I was in ICU, our daughter walked in and found me in a very uncomfortable position. I was paralised on the left side and could not move without help. It upset her and, being a nurse herself, went to the nurse in charge and said, "I want you to know that I would expect you to take care of my Mom in the same way you would expect me to take care of your Mom." There were no more incidents. Even though you are not a nurse, you can make the same comment. It might get their attention. I have been reading all the comments and you are getting some great advice from people who have first hand experience. Hang in there and you and your Dad are in my prayers. Vi Link to comment Share on other sites More sharing options...
bstockman Posted October 6, 2007 Share Posted October 6, 2007 I was a Medical Assistant.. And when I was in school I had a wonderful teacher. She said excatly what Vi said. Treat each patient as you would want your family treated. I NEVER forgot that. With the Insurance companies.. many Hospitals have cut back on nursing staff.. Go to the Charge nurse or the patient Liason.. document what you find, and that you expect better care of your dad. The comments you got are Totally un exceptable. When my son was in the hospital I YELLED at the RN and went to the DR. things changed after that. Link to comment Share on other sites More sharing options...
cindyg1947 Posted October 6, 2007 Share Posted October 6, 2007 A long time ago when my Dad was in a nursing home duying of Parkinsons I went in one day and found him in his wheel chair facing the wall in the hall and droolong all over himself! I went NUTS on that place and after that never had another problem. I was told long ago. Always make a friend in there. Things go alot better for you if you make a nurse a friend. One that you deal with every day. I did that with our Mom and my husband and had pretty good luck. Someone else said show up at different times if at all possible it keeps them on there toes. The one thing you have to do is be a storm trooper. you have to be vocal and make yourself heard. It's the quiet ones that get walked all over. It will no doubt be the hardest job you'll ever have but don't give up yet. Easy to say I know, BUT we have all been there and had to do all the same things. Good Luck.....HUGSSSSSSSSS Link to comment Share on other sites More sharing options...
kaykay Posted October 8, 2007 Author Share Posted October 8, 2007 my father tongue went back in his mouth and he sticks in it in and out. he was running a fever today but its under control now. i went and gave him a shave i would love to bath him but dont want to see his personal stuff . My father is a very simple man he does not have a fav book,song,music or anything all he likes to do he drink,work,and play the horses thats something my dad loves very much other then that its nothing i can think of that i can do for him but talk to him. iwant to spend more time with him but i have a 3 month old baby no help from my son father so i dont have no one to watch him and i cant take him to the hospital Link to comment Share on other sites More sharing options...
kaykay Posted October 8, 2007 Author Share Posted October 8, 2007 good news or at least i think so :happydance: my dad open his eyes today but it was not for me but for someone else who came to visit him who they are i dont know someone he knows from somewhere but the good things is he did open his eyes. the bad news is he has a fever again i thank everyone again for your support Link to comment Share on other sites More sharing options...
sisternlaw Posted October 8, 2007 Share Posted October 8, 2007 Hi KayKay, yes my brother in law David Berry (who will be 49 Oct. 28) is still in a coma. The 3rd of October marked sixth months. My sister takes care of him in her home. Like all the others, David was given the death sentence. He was in the hospital for 2 months then spent one "HORRIBLE" night in a nursing home. If you can avoid that at all ...please do. I know to bring him home would be too much for you. Especially since you have a child to take care of. My sister got help from the social workers at her hospital. Do you know if your Dad has insurance? It will help if he does. If he doesn't, there are state programs that you can get into for help. That's where the social workers come in. They can get you connected with the right help. David could not breath on his own at first, but after awhile, the lung specialist took him off the respirator little by little. He has been totally breathing on his own since then. They did not attempt to drain the blood off of David's brain either....I have read through different sources that it can dissapate on it's own over time. It just absorbs into the surrounding area. Unfortunately the doctors do not seem to care. In fact we felt like they would prefer that he just die so they wouldn't have to deal with it. They also were very anxious to get their hands on his organs......don't give in to the pressure. You do NOT have to do that. They will make you feel guilty about it, but don't let them. So many others have come out of coma's...My advice is to get help from a pastor in a church...or let them connect you with support. I know that God answers prayer KayKay....I will pray that you will get the help you need to help your dad. Meanwhile, just know that YOU can do what you want. You do not have to do what the hospital staff suggest. They will not give you hope. Look to this website for help also. The people here have been so helpful to me. David's stroke was just like your dad's. He is till in the coma, but is totally healthy otherwise. He does new things all the time.....little by little. Hang in there KayKay! Sisternlaw Link to comment Share on other sites More sharing options...
sisternlaw Posted October 11, 2007 Share Posted October 11, 2007 Hi KayKay, I hope you got my last message. I'm not always sure how this website works. It was on a different page. Anyway, I just wanted to let you know that my brother in law who is 48 had a brainstem bleed on April 3rd of this year. He is still in a coma. He was just like your dad. Not breathing on his own for awhile ect. But he did regain that ability. If you are going to have him moved to a facility, make sure that they are equipped for trach set up. When we moved David to a facility (for one night)...the care home had told us that they did have set up for trach and ventilator...but they did not. They lied to my sister. When we had him taken to the home, they had nothing. He began to struggle for breath...he had a high fever and his blood pressure went up to a dangerous level. We contacted the doctor and were able to get him back to the hospital in time. However without a doctors release, you cannot take him back to the hospital. You will be stuck, no matter how bad the carehome is. Just be very careful and go to the facility ...and make sure they are set up for trach and have a proper ventilator. My sister cares for David at home now. The insurance helped her to set up his trach feeding at home. She has all the proper equippment. She is not a nurse, but she watched the nurses at the hospital and is able to take care of him. Her insurance also provides her with a nurse that comes in several times a week to check on him. Otherwise my sister does it all. I know that is not an option for you, but there are very good care facilities out there. Just do a lot of checking. Don't let the hospital choose it for you unless you go check it out first. Don't worry about your dad KayKay...If he has all ready opened his eyes...even though they are fixed...he is progressing more quickly than David. His young age will be a positive factor in his recovery. There is plently of help here on this website. Take advantage of that, these people really care, and they have true life experiences. Just the fact that you are connected with them is a blessing. I am praying for you, Jocelyn (sisternlaw) Link to comment Share on other sites More sharing options...
kaykay Posted October 14, 2007 Author Share Posted October 14, 2007 my father open his eyes more now still dont respond to me telling him to do something but he looks at me to my friend to the nurse and to the t.v what could this mean? the nurse said he is not in a coma any more so does this mean he is in a vegetable state or did this happen to alot of people when they come out of a coma Link to comment Share on other sites More sharing options...
kaykay Posted October 14, 2007 Author Share Posted October 14, 2007 Hello Kay, I had the same but i was 55, since joining StrokeNet i have e mailed many other brainstem bleed survivors and the one thing that is common is that in almost every case the doctors tried to tell the relatives that there was little hope. Do not believe them there are many of us here to tell the tale and there are many who have been in a coma far longer. Do not give up hope and keep talking to him. All the best to you both Mike were you in a coma and if so for how long ? can you tell me a little bit about your story please thanks when you came out of the coma how were you? were you able to talk eat or did you just look around ? Link to comment Share on other sites More sharing options...
kaykay Posted October 14, 2007 Author Share Posted October 14, 2007 I had a brainstem hemorrhage at 46. One statistic I read was that 90% of brainstem stroke patients die in the first month. He has already made it over the hurdle of the first month. My family was talked to about organ donation and here I am ten years later using all those organs myself. I was not able to return to work. I walk with a cart. I still have a number of physical problems. But, I am able to volunteer and as you can see my brain is still working well and I can use the computer without a problem. I was only in a coma for 2 weeks, but I remember nothing for the first 2 1/2 months. I am told that during that time I became more and more able to converse with people. But, I don't remember any of it. I was in hospitals for 4 months and 3 weeks, the last 7 in a rehab hospital. Then I was in outpatient therapy 3 days a week for 8 months. It took a lot of time and hard work. No one can say what your Dad's outcome will be. All you can do at this point is to encourage him, and be an advocate for him. Talk to the medical staff about rehab. Look forward to the day he will be able to actively participate. Good luck to you. when you came out of the coma what were you able to do becuase my dad is out of the coma but all he does is look around . how were you when you came out of the coma and what were you able to do ! Link to comment Share on other sites More sharing options...
kaykay Posted October 14, 2007 Author Share Posted October 14, 2007 Hi KayKay, I hope you got my last message. I'm not always sure how this website works. It was on a different page. Anyway, I just wanted to let you know that my brother in law who is 48 had a brainstem bleed on April 3rd of this year. He is still in a coma. He was just like your dad. Not breathing on his own for awhile ect. But he did regain that ability. If you are going to have him moved to a facility, make sure that they are equipped for trach set up. When we moved David to a facility (for one night)...the care home had told us that they did have set up for trach and ventilator...but they did not. They lied to my sister. When we had him taken to the home, they had nothing. He began to struggle for breath...he had a high fever and his blood pressure went up to a dangerous level. We contacted the doctor and were able to get him back to the hospital in time. However without a doctors release, you cannot take him back to the hospital. You will be stuck, no matter how bad the carehome is. Just be very careful and go to the facility ...and make sure they are set up for trach and have a proper ventilator. My sister cares for David at home now. The insurance helped her to set up his trach feeding at home. She has all the proper equippment. She is not a nurse, but she watched the nurses at the hospital and is able to take care of him. Her insurance also provides her with a nurse that comes in several times a week to check on him. Otherwise my sister does it all. I know that is not an option for you, but there are very good care facilities out there. Just do a lot of checking. Don't let the hospital choose it for you unless you go check it out first. Don't worry about your dad KayKay...If he has all ready opened his eyes...even though they are fixed...he is progressing more quickly than David. His young age will be a positive factor in his recovery. There is plently of help here on this website. Take advantage of that, these people really care, and they have true life experiences. Just the fact that you are connected with them is a blessing. I am praying for you, Jocelyn (sisternlaw) my dad opens his eyes all the time now and looks around at the t.v me and who ever i am with i asked the nurse if e was still in a coma and she said no but when i asked the drs they said yes Link to comment Share on other sites More sharing options...
kaykay Posted October 14, 2007 Author Share Posted October 14, 2007 oh yeah my father is also breathing on his own all the way now Link to comment Share on other sites More sharing options...
kaykay Posted October 14, 2007 Author Share Posted October 14, 2007 i thank everyone for all your support and prayers once again please let me and my dad stay in your prayers thanks oh yeah im so happy i found this site so helpful dont know what i would do if i never found this site it has given me so much hope Link to comment Share on other sites More sharing options...
dstraugh Posted October 14, 2007 Share Posted October 14, 2007 Thanks for the update - that's good news. Continued thoughts and prayers coming your way. Link to comment Share on other sites More sharing options...
bstockman Posted October 14, 2007 Share Posted October 14, 2007 Thanks Kay kay, That is good news, he is breathing on his own,, and following voices. On the Main Message Board is A Forum Called Classic Postings. In that forum is A Letter From Your Brain. You may want to print out a few copies. I even gave my Dr one. Is your Dad getting better care now? I will continue to keep you and your Dad close in my thoughts in prayers.. along with the rest of "my cyber family" Hang in there.. and thanks sooo much for keeping us updated. We are here for you. Link to comment Share on other sites More sharing options...
krlock Posted October 21, 2007 Share Posted October 21, 2007 Hi. I've been reading your posts and you are in my thoughts and prayers. My dad had his massive brainstem stroke in January 2007. He finally came home in March 2007. Every day is something different - good day, bad day. Keep your thoughts positive - we were told to expect nothing more than a feeding tube/ventilator/nursing home. My dad is home now and although it is very slow, he is progressing. And yes, we are without the feeding tube and ventilator. My mother has her hands full but it is a miracle. It is so hard to see your parent in that condition. Karen Link to comment Share on other sites More sharing options...
kaykay Posted October 24, 2007 Author Share Posted October 24, 2007 i went to the long term care place i wanted my dad to go to and they will not accept him because they dont think i will apply for medicare so now i have no choice but to send him to a place i dont want too. becuase his insurance only covers three places. mean while i went to go see my dad today and he was laying in stool all the way up to his back and his one foot was off the side of the bed while the other was stuck in the rail i went home to get my camera and told my mom not to let thme clean him up when i got back she let them clean him up before i could get the pictures i was really mad becuase that is neglect. it hurt me so bad to see him like that once again i wanted to just let my father go becuase i feel like i am making the wrong choice for him.the things are not really going good for me at this point becuase i feel like they want to run over me becuase they think imma child i have one picture of my father in stool but i wanted the rest other then that my dad is still breathing on his own he opens his eyes from time to time but never follow things with hie eyes just looks in one spot Link to comment Share on other sites More sharing options...
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