kaykay Posted October 1, 2007 Share Posted October 1, 2007 On tuesday the 9/21/2007 at my work my father had a brainstem hemorrhage and passed out at work.he was taken to the hospital where they did a MRI and discoved he had a stroke in the brainstem area with a bleed, they said it was a very large stroke and that my dad was unconscious and in a coma from the area he had the stroke in i think the pons and medulla area.they said my dad will never recover the Doctor said is cant even give me a 1% chance that my dad will survive without the ventilator and how i see he will be the way i see him for the rest of my life if i wanted to keep him alive. My father is not married and i am his only child so there for i have to make all decision the doctor gave me two options give my fathe a tube feedinig and trek or take him off the ventilator and let him pass on my father never told me what he would want so its really hard for me to decide whats best for my dad when i am only 23 years old i just had my first child and this is very hard for me i still have hope my dad will come out the coma but the doctors gave me no hope not even a % chance becuase the area my dad had the stroke controls his breathing,heart rate,temp,and consciousness and becuase the cells are damage he will stay in a coma. My dad is not brain dead he breath on his on from time to time and never responds when i talk to him he has been in the coma for 10 days now not sure if there is hope to recovery from this ? Link to comment Share on other sites More sharing options...
2ndChance Posted October 1, 2007 Share Posted October 1, 2007 Yes! people recover from this. I would choose the G tube & trach for at least two months and see if there is any change before I made any decisions. Granted, if he improves he will probably be permanently disabled in some form, but he could still have a quality life. So sorry you are going through this alone. Does he have siblings or parents to support you? Link to comment Share on other sites More sharing options...
Guest PERRYS Posted October 1, 2007 Share Posted October 1, 2007 I am so sorry to hear this about your father. My husband, Perry had a stroke in the pons area only. I was given no hope at all that he would live. He did live and then they told me he would be what the call Locked In the rest of his life. That he was able to understand everything but, it is as though his brain is cut off from his body because the pons area was destroyed. He did recover way more than ever believed but, is still in a wheelchair and cannot speak. He has a lot of use in his right arm so he is able to use the computer. He does breath on his own, eats, talks a little, has control of his bowels and bladder. I will tell you though that he came out of his coma after about seven days and he is a wonderful man of God. I believe his faith is what has led him this far along with his determination. He did not have any damage in any other part of his brain. It is a very hard recovery and took about two months before he started to show any improvement at all. He was in the hospital for six months and outpatient for over a year. He needs more therapy but of course the insurance and medicare do not want to pay. You do have a very hard decision to make and only you know what is best in your heart. Doctors do not always know everything. Follow your instinct and get more than one opinion. The amount of damage to his brain from the medulla area may be great and that would make a big difference. Perry has a website if you would like to go check it out. www.lighthousebeam.com You will be in my prayers, Myra Stevens Link to comment Share on other sites More sharing options...
dstraugh Posted October 2, 2007 Share Posted October 2, 2007 Hi, I'm so sorry to hear what happened to your Dad. Is there any family members you can turn to who may know your what your Dad's wishes might be? I would pursue further medical measures rather than giving up. There are many members, who are very much alive today, after their families were told they would not survive. My thoughts and prayers are with you and your Dad. Link to comment Share on other sites More sharing options...
myhome Posted October 2, 2007 Share Posted October 2, 2007 I'm sorry to hear about your Dad, and at 23yrs. the doctors have dumped alot on your shoulders. There's alot of survivors here that the doctors said the same thing about, and they're very much alive. My wife was told that I'd never walk again, fooled them....I'm driving. Give your Dad a chance to recover if it's possible, the doctors don't know everything, just ask any survivor here. I'm going to pray for your Father, I know that I won't be the only one. Link to comment Share on other sites More sharing options...
kaykay Posted October 2, 2007 Author Share Posted October 2, 2007 My father mother past away in 1998 and his dad died in 1995 he has an older brother that he has not talked to since his mother passed away so i am really the only person my dad has. i go see him every day and he is in stable condition i got a tube feeding and a trek for him two days ago. i went to go see him for a week stright and he had no movement. after they put the trek in he had involuntary movement so they say but does not respond to my commands to move if you hear me but when i touch him he moves some and he is not brain dead they said he is not paralyzed he does not have locked in syndrome his blood pressure is good he temp is good he has had no more bleeding yet. i really dont have anyone to help make it through this or that i can talk to .but i do have hope because i feel like if god wanted my father dead he would have died a long time ago how long can he be in the coma ? can he come out if the blood is still there ? have anyone had a bleed inthat area and come out of the coma ? Link to comment Share on other sites More sharing options...
kaykay Posted October 2, 2007 Author Share Posted October 2, 2007 i thank everyone for their support and kind words of hope and encouragement Link to comment Share on other sites More sharing options...
Phoenix Posted October 2, 2007 Share Posted October 2, 2007 You and your Dad are in my thoughts and prayers. Link to comment Share on other sites More sharing options...
bstockman Posted October 2, 2007 Share Posted October 2, 2007 Hi Kay Kay, You have problem read the topics and posts in the BrainStem Forum on the message board. Our Founder and CEO of this site is a Brain Stem Stroke Survivor to read more about him : http://www.strokenetwork.org/staff/stevemallory/ If your dad is not "locked in" That is a real plus. Your dad could be in a coma for awhile. The brain is healing.. it takes a long time. Sleep and being quiet is a good thing for now. Keep talking to him, you could ask him to blink.. or squeeze your hand, move his toe.. Is there special music your dad liked? maybe play it quietly for him. Read softly to him from a book, or something he liked. He may turn his head or move, watch for little signals .. that you know. Don't speak negatively.. or let the nurses or Dr's speak negative in his hearing. It is hard to know what he may hear or understand. If he blinks or moves his finger for you.. Tell him how great.. and you saw him do it, encourage him. Several members here were told (or spouse's were told) they would be a "vegetable" well we have ears of corn or pea pods typing and active.. here on site or their cargivers are here. I also would give it several months before you make decisions to stop life support. Understand this is going to be a LONG SLOW RECOVERY, it will take PATIENCE and extremely hard work. Is your dad a 'fighter" Also understand your dad is not going to come out of this 100%. But he can have a quality of life. Life is going to be difficult for you both for awhile. When your dad comes out of the coma, there is hard work, and a lot of emotional issues to go through. We have a library and loads of information on site. Warm wishes to you and your dad. Come back often, we are here for you,. shoulders to lean on, a place to rant or vent, empathy and understanding and loads of virtual ((((HUGS))))) Link to comment Share on other sites More sharing options...
scrapdoo Posted October 2, 2007 Share Posted October 2, 2007 Kay Kay, Think back over the time you have known your father. Were there any times, like his father's death that can give you and idea of what he might want? Do you think now is the time to contact his brother? I hope you have friends to talk with or a church you can go to for support. Now may be a good time to start seeing a therapist. The road is long through stroke and recovery. A therapist was and is very helpful to me. Docotrs do not know everything about brain recovery. The brain is wonderful becaus eit trains other areas to perform functions from areas that can no longer perform them. Keep strong and have faith! Beth Link to comment Share on other sites More sharing options...
ksaul Posted October 2, 2007 Share Posted October 2, 2007 kay kay, i am so sorry to hear of your father's stroke. the burden of doctors asking you to choose must be overwhelming. please give your dad some time - as you have read here at this site so many survivors have recovered well past their doctors projections and have found a new life. perhaps trying to contact the brother might be a help or talk with friend you can trust. you know your dad - please trust your heart and know that you and your dad are in our thoughts. kathy Link to comment Share on other sites More sharing options...
cindyg1947 Posted October 2, 2007 Share Posted October 2, 2007 Kay.............my daughters best friends Dad went through the same thing. They were told he would not survive and he was in a coma for 2 months. She went to the hospital every day and read to him and one day he oppened his eyes. They were told he would never have a quality of life and would be a vegetable. He was in a acute re-hab for 1 year. Today 3 years later, he walks and drives and has a slight limp. Miricles happen every day as you can see on here. Give it some time and don't give up hope! Best of luck......BIG HUGS Link to comment Share on other sites More sharing options...
danni3 Posted October 2, 2007 Share Posted October 2, 2007 KAY I AM THINKING OR SOMETHING TO SAY TO YOU AND ALL I COULD COME UP WITH IS THAT YOU MUST GIVE YOUR DAD ALL THE CHANCES HE DESERVE,TO LIVE BECAUSE ARE THE ONLY ONE HE HAVE RIGHT NOW, WHAT EVER IT TAKE NOT TO PUT SUCH A BURDEN ON YOU AND YOUR NEW KID,BUT HANG AND THERE WITH HIM AND DONOT LET THE DOCTOR RUSH YOU AND TO SOMETHING TO FAST HE IS THE MAN THAT HELP BRING YOU AND TO THIS WORLD,SO HE WORST A GOOD FIGHT. GOD BLESS YOU AND HIM. Link to comment Share on other sites More sharing options...
kanderson Posted October 2, 2007 Share Posted October 2, 2007 kay, i too am so sorry to hear of your dads stroke. i urge you to give him a chance, NEVER GIVE UP HOPE, doctors always present to you the worst case scenario. get other opinions before you decide anything. others have survived this type of stroke and are here to tell you. the brain is a remarkable organ and it can repair itself with time. always talk to your dad when you are with him, play music, anything to help him wake up from the coma. patience and hard work is very important in recovery from a stroke. but he can live a good life. i was 48 when my stroke occurred but not the same type as your dad. seek support from family, friends and your church to help you through this. you have alot on your plate right now. be strong for your dad, he needs you now. you are his advocate. i will keep your family in my prayers. god bless you all. keep us posted on how he is doing. Link to comment Share on other sites More sharing options...
fking Posted October 3, 2007 Share Posted October 3, 2007 Kay Kay, I join the others in a big welcome to the site and many prayers for your dad and a recovery from his present state. Obviously, you have a lots to consider under these circumstances but I would not give up on his life. Put your faith in God that it's not his time to go as with many of us still here now. Like you said, "he is not brain dead." Use what ever needed to keep him alive and a chance to recover in that case since nothing was discussed between you and him about his desires and wishes in this situation. Link to comment Share on other sites More sharing options...
kaykay Posted October 3, 2007 Author Share Posted October 3, 2007 Thanks again everyone today to doctor called and told me i needed to pick a long term care place for my father to go to because they are not doing anything for him at the hospital. My dad has only been there for two weeks i feel like they are tryinig to push me because i am young. Is there any other test i can request them to do for my father or anything i may be missing thats needs to be done that can help him in the long run?Its hard to go and see him like this today the nurse told me my father had fixed eyes whatever that is.other then that there has been no change i also found out the vent is breathing for my father and he is only taking two breaths by him self. Link to comment Share on other sites More sharing options...
mikisteph Posted October 3, 2007 Share Posted October 3, 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 Link to comment Share on other sites More sharing options...
mekelly Posted October 3, 2007 Share Posted October 3, 2007 They may be pushing you because you are young- but it is more likely that they think they are right- and are used to telling people what to do. It is horrible that you are going through this as young as you are, and without a lot of support. I wish I could change that for you but I can't. What I can tell you is that you need to start researching the options in order to be his advocate. Most places cannot discharge your Dad without your approval without giving you a right to appeal. Find out what the standards are and the appeal process. Be prepared to use it. At the same time, ASK QUESTIONS! First question, is there somwhere better than the hospital that he could get into? A good rehab facility that specializes in strokes is probably the very best place for him- not a nursing home or a regular hospital. Is there a good rehab hospital near you? Most states have a couple. Is there one near you that is any good with strokes? Can you visit it? You can ask at the hospital and do a lot of research on line. If there is a good rehab hospital around, ask what the criteria are for acceptance. Second question, does your Dad meet the criteria for a rehab? DO NOT ACCEPT THE HOSPITAL'S WORD FOR THIS. If they have given up on your Dad, they may think that a nursing home is the best option and may not be viewing the criteria in your Dad's best interest. Ask if the criteria is written. If they tell you it is based on the insurance company or medicare, find out the claim number and the claims rep they are dealing with. Call him or her. Ask what the critertia really is. Ask if it is written. Get a copy of any written criteria and a copy of your dad's chart and treatment notes. See if you have an argument that he meets the criteria. If so, try to get him accepted in the rehab hospital. If he doesn't meet the criteria or if there is no good rehab facility, does he meet the criteria for discharge from the hospital.? Again, ask for his reports and treatment nortes and any written criteria. Be prepared to write an appeal of any discharge decision. This won't keep him there forever but migh buy you some time. Is there a decent skilled nursing home if he cannot get into rehab. Look on line for ratings. Visit, visit. visit. Ask about staff to patient ratios (these should be poseted), visting hours, what they offer for therapy, what experience they have with stroke victims.. Visit at unusual times. How clean is it? How does it smell? How do the people look? You may not get into your first choice so ask about movement to another facitlity- what is the process for moving? My Mom (not in a coma but paralyzed) was only in the hospital for 3 days. They wanted to move her and initially suggested a nusrsing home- believing that she wasn't strong enough for a rehab facility. I questioned the neurologist (politely) and he admitted that if we could get her in a Rehab hospital that would be best for her- so we pushed. The Rehab facility initially took her but after two weeks wanted to discharge for failure to "progress". So we pushed. When I received all of the information and made it very clear that I would appeal any discharge to a nursing home because she WAS progressing (just slowly) they gave her more time. They did not want an appeal on their record- said nobody had filed an appeal in over five years. She was not given a lot more time but during that extra time she moved her leg for the very first time. When she was sent to a nursing home later, we were not able to get her into our first choice. When we tried to move her to the better nursing home, we were told that she did not meet their standards. So we pushed. After reviewing the written standards, and her medical records, we were able to convince the better nursing home to take her. While there we still needed to push, and we did. She is now home with a full time aide. She is getting better- although slowly. I didn't listen when they said she wouldn't - and neither did she. Good luck anf keep posting. We are thinking of you. Link to comment Share on other sites More sharing options...
cindyg1947 Posted October 3, 2007 Share Posted October 3, 2007 There should be a Social Worker at the hospital. If no one has put you in touch with her do so right away. It is there job to help you and to make calls. If you get no where with her ask to see her supervisor. They should be making calls for you and helping you find a good place for him to go. Make sure that when you find a place you check out the gym. Ask what kind of program they would set up for him and keep on them. Most places will want to stop if they stop progressing but any progress at all counts as progress so you will have to keep on top of it. It's a big job especially having a baby but take one day, one fight at a time and get all the help you can with social workers. Keep a journal, start it now, it will save you alot of aggrivation in the long run. Write down everything that happend durring each day. Tests, med changes anything you can think of. Good luck and God Bless. Link to comment Share on other sites More sharing options...
kaykay Posted October 4, 2007 Author Share Posted October 4, 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 Link to comment Share on other sites More sharing options...
kaykay Posted October 4, 2007 Author Share Posted October 4, 2007 Thanks again everyone for your support .i went to the hospital today to see my dad but he doing pretty much the same. is it normal for his eyes to look like he not there. his tongue and lips are swelling up. his tongue is so big that its bleeding from the pressure of his teeth ( nurse said it came from some meds they gave him but they stop the use of that med and it should go away)i will meet with the social worker to discuss discharge. They never did drain the blood in my dad brain so will it just stay there or what? Link to comment Share on other sites More sharing options...
Founder and Owner smallory Posted October 4, 2007 Founder and Owner Share Posted October 4, 2007 Hi, chances are that your dad's cognitive skills were not affected by the stroke, which means that he might be in a coma but his ability to think is still intact. Brainstem strokes usually just effect the motor skills and are different from the typical stroke. I had a brainstem stroke but was not in a coma. It was at least five weeks before I was able to enter a rehabilitation hospital. I would not move him to a nursing home under any circumstances! Ask the social worker if you MUST do this and let us know what she says. I think that enough people here are following your story and will try to guide you in the right direction. We will let you know if the hospital is telling you the right thing or is just trying to take advantage of you. We are here for you every day, don't worry! In the meantime, check out http://www.strokecaregiver.org/handbook.htm Link to comment Share on other sites More sharing options...
kaykay Posted October 4, 2007 Author Share Posted October 4, 2007 hey i have read alot of stories about people who have had brainstem stroke but not a brainstem bleed are there any brainstem bleed survivors on here if so i would like to hear your story please. Link to comment Share on other sites More sharing options...
lisas Posted October 4, 2007 Share Posted October 4, 2007 KAYKAY, FIRST, I'M VERY SORRY TO HEAR ABOUT YOUR FATHER. I KNOW YOU'RE DOING THE BEST THAT YOU CAN. ALWAYS REMEMBER THAT. MY DAUGHTER RACHEL IS YOUR AGE. SHE HAD A MASSIVE STROKE LAST YEAR. WE WERE TOLD SHE WOULDN'T SURVIVE THE NIGHT. BUT SHE'S HERE WITH US TODAY. THERE'S ALWAYS HOPE KAYKAY. RACHEL, AS WELL AS MANY OTHERS HERE WENT TO A STROKE REHAB HOSPITAL. PLEASE CHECK INTO THIS WITH THE SOCIAL WORKER. WRITE THINGS DOWN. I KEPT A NOTEBOOK AS TO REMEMBER DATES, MEDS, DOCTORS NAMES, ETC... MEDICINE IS NOT AN EXACT SCIENCE. PEOPLE REACT DIFFERENTLY TO SITUATIONS. I THINK FOR NOW YOU SHOULD TRY EVERYTHING POSSIBLE FOR YOUR DAD. IF AT ALL POSSIBLE, YOU NEED TO CONTACT YOUR FATHERS BROTHER. IT WOULDN'T HURT TO GET ANOTHER PERSPECTIVE AND HOPEFULLY GIVE YOU SOME MORAL SUPPORT. I WILL KEEP YOU IN MY PRAYERS. LOTS OF LUCK-LISA :friends: Link to comment Share on other sites More sharing options...
Guest lwisman Posted October 4, 2007 Share Posted October 4, 2007 I had a brainstem stroke when I was 46. The doctors recommended I be moved to a nursing home. My sister visited three and could not imagine I would improve in any of them. She told the doctors that she intended to take me into her home (I was living by myself at the time of the stroke.). Immediately the medical team changed there questions to what they needed to do to get me into a rehabilitation center. They did their work and the Rehabilitation Institute of Chicago agreed to admit. me. BTW, one reason they get high marks is that they are very picky about who they let in. It made all the difference getting into a top notch rehab center and having my family backing me. Link to comment Share on other sites More sharing options...
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