Avatar universal

Was Dad really brain dead ?

On Aug. 30th 2007 my Dad had been out weedeating right before dark. Mom had went in for 10 or 15 minutes,and when she came back out, found Dad lying on the ground. She rushed out to him and said he wasn't moving. She ran back to the house to call 911. She hurried back to him, unsure if he was breathing or had a heartbeat.She said she just kept tugging at him, telling him to get up.When the ambulance got there, they shocked him 5 or 6 times and said they had something but never would call it  a heartbeat.
We spent the next 2 weeks at the hospital with Dad in the CCU. A heart doctor said Dad had a heartattack (it's confusing because he, among the other doctors kept saying different things). He once said it was light, then told us it was massive. There was a neurologist called in because Dad wasn't waking up. I guess a few days went by and they did a scan (I forgot the initials of what this test is called), which came back saying there was very little brain activity. 2 or 3 days later, they did this test again and got the same result. They had also did some blood work and sent it off which took about a week. The results came back "brain death". Even though Dad wasn't waking up, his eyes would open throughout the day. It was always as if his eyes were looking up, so to speak. He was also on a machine that was putting oxygen into him / breathing for him. He had a tube fixed in his throat for feedings and one right beside it going into his lungs for suctioning his lungs. They did this to him often and by the look on his face it was very painful to him.His eyes always flew open when they suctioned his lungs. They considered Dad comatose. He didn't move at all on his own. I remember once they suctioned his lungs and his knees pulled up toward his chest. I also remember 2 times over the 2 week period, his arms lying flat beside him and his hands would fly up, as if he was strapped down and trying to get free. They told us that a pretty good sign of brain death was having no gag reflexes. The day we had the machine removed, he had good gag reflexes. The neurologist  said that Dad's eyes showed a little response to light or when he would touch Dad's eye ball with a Q-tip. Sometimes he would run something up the bottom of Dad's feet and sometimes his foot would jerk, other times there was nothing. He insisted that Dad was brain dead and any signs we were seeing was from a brain stem that apparently still had a little blood flow or oxygen left in it and that it too would eventually die out. The day before we removed the machines, the neurologist told us that the 4 tests all showed brain death but he himself didn't think Dad was brain dead.
When Dad would have his eyes open, I would talk to him. A couple of times it was as though he was trying to move his mouth to talk. I'd always tell him about the tubes in his mouth and that it would do no good to try to talk right now. I would ask him questions sometimes and tell him that if the answer was yes, for him to blink his eyes really big for me (as in closing them tight for 1 or 2 seconds before opening them). Dad would have known what I meant. Anyway, I could ask him things and sometimes he blinked for me. Any other time, his eyes blinked lightly and not very often. His sister and my Mom all saw this happen different times. Sometimes I would just test him about things that I would hacve already known the answer and he always answered right with blinking big for me or keeping his eyes open, meaning no. I explained to him about the machine breathing for him, how it would show on the screen if he was doing any of the breathing on his own. I told him that if he could at all to try and breath some. The machine had set on 16 for over 24 hrs. When I'd ask Dad to breath, the count would start going up as high a 21 sometimes. I didn't keep at him constantly because I didn't want to tire him out. I had asked him different times if he could feel me and Mom holding his hands, rubbing his arms or legs. He never blinked yes for me on that. Mom and I have had a rough time with all of this. We loved Dad dearly. The doctors kept telling us different things. Mom had told them all how years ago Dad had 2 different back surgeries. Mom has wondered if maybe Dad's back got broken as he fell to the ground and maybe that's part of why he wasn't moving or feeling us.   Was it really brain death ? We need to know the truth. Doctors never even made a back xray or anything.   Please give me your advice. If you need more info, I will send it. Thank you very much for your time.  
20 Responses
Avatar universal
My heart goes out to you.
Bless you and your family!
Let me tell you firsthand from my person experience - Doctors dont know! They have statistics and theories and case studies they go by, but when you are talking about the brain - the wonderous brain that is a mircacle.....no two brains are alike! The information in your story that he comprehended your questions, to me (and I am no doc) screams brain activity and processing information.
Let me share my story about my brain injury. I am 44, this happen (wow) 30 years ago - what a trip! sorry, off track.
We were passsoniate 4 wheelers and were at Pismo Beach, CA when sand highway and the beach was open to drive on. I was in the back of a racing Jeep with no seats just sitting on the metal. Dad went up the front of a really steep hill (at night) with no other side just a drop off. We flew through the air and dad turned the motor off, my head flung back heard and hit on the tailgate at the base of my head near my neck. I was unconcious - I was in a coma for 4 days. I had franctured eardrums, strained back, concusion, cuntusion, and a fractured skull. They told my parents that if I woke up I would be vegetable in a wheelchair for the rest of my life.
I woke up on the 5th day asking if there any cute boys in the hospital and could I have some pretzels. I have not felt ONE DAY of pain from that accident in my life. I have problems from it like balance issues and I cant ride on carnival ride (dizzy) but my point is, doctors have no definate. They dont always know. From the studies I have done on this, it is m opinion that the back seriously affects movement and function. It could be something happened to his back that caused his health problems, but I guess I want to say that whatever it was - for whatever reaason, he has passed. I am soo sorry for your loss, I lost my sis a few months ago. My advice is wait until you meet him again and let him tell you. I dont think you will get the answers from doctors.
Bless you and your family this Holiday season.
~peace and grace.
Avatar universal
I will say that doctors truley do not know when it comes to the point when we stop feeling and are "brain dead"  There have been cases of people being brain dead showing signs of pain as they are being preped for donation. Conversly there are peolple who show absolutely no signs of pain or awarness at all.

Removing a ventilator could be seen as merciful as he would have just went to sleep and never woke up. I see it as putting his life in Gods hands. Dealing with death can be hard, as I just lost my dad and towards the end they bascially put him into a morphine induced coma and he died from the morphine surpressing his breathing.
Avatar universal
Angela,  it is our nature to want to know what happened but something like this will probably never be known.  Accept the fact that the Good Lord wanted him and he is now in a better place than we are.  I have a feeling your dad is still around you.  Have you noticed any lights blinking, pennies on the ground, or other odd things?  That's your dad.  Good luck to you and your family.
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Everyone who is replying , I thank you so very much. I read them all. I would also like to ad this. When we had the machines and IV's removed from Dad, it was approx. 5 to 6 hours before he passed on. The nurse came in and gave him a shot of something that was supposed to keep him peaceful and relaxed. The doctor had mentioned that they could give him this shot and we said we would let them  know if we did want it. We never said we did but they gave it anyway. During the 5 or 6 hrs, Dad lay there and never opened his eyes again. His breathing/snoring sounds were a little loud but he did have some sleep apnea.
Did I mention the time during those 2 weeks that his body temp went up to 104.6 and wouldn't come down. They put him on a cooling blanket to bring it down. They said it wouldn't come down on it's own because the part of the brain that controls temp, wasn't working.
If anyone knows any other stories or opinions, remember, I am reading them.
Avatar universal
Your story is a sad one. I dont want to fuel your fire, but staying alive 6 hours after life support is disconnected would defintely cause me concern. I am no doctor, but I thought life support meant sustaining life and the only way the person is alive. He was alive without it..........you have a tough road to process that. I am very very sorry. However, nothing we can say, do or solve brings our loved ones back. I hope you heavy heart can heal and move forward in your life no matter what the circumstance.
My husband father was killed in a long term hospital (long story) and his temp was 105/105 also. It is hard to accept when they might have lived. This was in 1990 and still we have days that are hard, missing him.
Take care, keep posting me, Okay?
Avatar universal
Tam, thank you for keeping in touch and up to date with my story. If you ever need to talk about anything, I am here to listen also.  Oh, also Dad was supposed to be having seizeres and they gave him meds through IV and finally got them stopped. They told us that his brain was in a constant seizure for the 1st few days. Sometimes we could tell because it looked like he was biting his tongue or chewing. I know I have to hold on to the fact that Dad is in a better place, Heaven, no pain or sadness for him anymore. I just hate the thoughts that we listened to the doctors and their tests. Mom kept praying for a miracle, maybe God would have let us keep him and he would have been ok, just like you.
Avatar universal
Did the doctors tell you the drugs stopped the seizures or just the outward physical symptoms, because sometimes a doctor will in effect paralyze a patient so they don't die from exhaustion from the  constant seizing.

As I had to deal with my dying father this year I know how poor Hospice and end of life care can be, I was fortuante that my Dads PCP (and mine) has excellent bedside manner and was willing to tell me everything that was going on with my father even if it meant breaking confidentiality.  

Also there is a lot doctors just don't know about death and the end of life process. It still remains one of the greatest mysteries of medicine. There are many cases of patients who have severe dementia or other disorders becoming 100% luicid in the minutes and hours before death. I to question if there was anything that could have been done with my father, but I have to understand that it was probably best he went quickly instead of being stuck in a hospital bed for weeks or months.
Avatar universal
Hi Angela,
How are you holding up.
I know you wish you could have your dad back no matter what condition he was in, but trust me THAT IS A DAMNED MISERABLE ROAD.
My sister had brain surgery in Feb 2006. I prayed 24/7 for her to make it "through the surgery" and she did, but she was an invalid for 15 months before another tumor killed her May 4, 2007.
She had no quality of life, just sitting in a chair drooling, she could not even potty, had to wear diapers - anyway my point is.....sometimes out of love we need to let them go where they dont have to live with the pain! If your dad had come home needed medical assistance it is soooooooooo hard. Hard on everyone and it is sad to see them like that knowing they ised to live life. I know, as I to also that wishes are what keep us moving forward and help us get through the days. I spent an entire month after my sisters funeral crying and not leaving the house. I now can laugh, and enjoy life again because I have a beautiful family that is there for me. Lean on those who are left and live life with them.
The advice I can give you that helped me accept that my baby sis and best friend is not "phycially" in my life are. I have her picture on my cell phone sceen and the ringtone from Fireflght that says - "Its you that I search for, and its you I cant live without!" I kiss her pix everyday and make her memory a part of my life. She is forever in my heart. And there are 10,000 what ifs related to her surgery and health but they mean nothing, really.....time does not go bakcwards, only forwards - have you ever heard the saying.....there is a reason the rear view mirror is so little and the windshield is so big! Try to look through the windshiel more and the rear view mirror less because it is behind you and everyday you spend in the past is a day of the future lost!
I am here off and on ( I work 50 hours a week, have a family and grandkids, and go to college online - so it may be a few days before I post, keep watching though.)
My thoughts and prayers are with you that your heart will find the peace it needs to start healing. You will never forget, but you can go on - you DO have the strength!
~peace and grace!
Avatar universal
I still read everything on here although I haven't had much time lately to write back. Thanks to all and feel free to write anytime.          Angela
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Angela, How you doing?????
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Tam, I sent you a message to be added to friends list. Did you get it ?
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Nope. Is there something I can do to initiate it?
Avatar universal
shouldnt brain death mean a person cant respond? wasnt he blinking and his eyes open to me that dont sound like brain death does it you??
Avatar universal
I wish my sister loved me even half as much....


Something happened to your father.  It was a terrible thing and your post sounds like he was in a lot of pain.  Maybe he was lucid at times and maybe he didn''t answer your question about feeling because deep down he knew it was over.  Maybe he did not want to give you false hope.  Take care of yourself, and I hope you feel better soon.
Avatar universal
prettyinpink400 and savik, thanks for writing. No, I don't feel that he was brain dead. Seems like we, especially Mom, keep thinking about the what if's...  She can't help but wonder if when Dad fell he might have broken his back or something happened to make him paralyzed. At the hospital they sure didn't do any xrays or anything to check and Mom has even mentioned to them several times about Dad's past back surgeries for ruptured disks and his back still bothered him at times.
I know we can't bring him back , I can be content because I know Dad is in Heaven, he was a good Christian man. I just hate it because Mom tortures herself, claiming that she's killed him, that she shouldn't have had the machine taken off so soon. I try to tell her that Dad wouldn't have wanted to live as a vegetable (that's what the doctors said). Dad had even told Mom he'd never want to live like that. That's basically how my Mom's mother is living right now because of a masive stroke in Jan 07.  Mom has really been hit hard with sickness and death of the 2 people she loves/loved more than anything in this world besides me. Maybe all of you who read this could please just say a prayer for my Mother. She needs peace in her life and to stop blaming herself with things.
I still read all coments, sometimes it's just a few days before I get a chance to.
Avatar universal
I will definitely pray for your mom and for you.  It is a lot to deal with.  Guilt and what if's are very hard to live with, because it just eats you up and doesn't get better.  I know, because I am one of those people and nothing good comes from it.  I pray that your mom finds peace with this and comfort for her loss.
Avatar universal
Hello Angela67,

I know it' s been like 5 years since this post was written, but I must respond with my kindest regards to you and your family.
I'll try and be brief and hope I don't open up any wounds in the process.

I read each one of your posts and can tell you with 100% certainty (legally and morally) that your father was NOT brain dead!!! The second your father took a breath on hs own, the doctor should have changed his diagnosis and treated him accordingly!!! PERIOD!!! Everyone involved and responsible for the care of your father should, and still could lose their job, medical license and possibly be brought up on charges. I'm blown away by your story.
None of the above may have changed the outcome of this unfortunate situation, but then again.....it very well could of given your father a fighting chance.
There are laws and guidelines in place that every hospital MUST follow before making the determination of brain death. Was your Dad a donor? You can contact me if you feel the need to know more. God bless...

Avatar universal
Angela, I dont know if you still check on this or not, but if you do I hope I can give you something akin to a straight answer.  First off I have been a critical care RN for over 10 years so I have been around many people that are dead or dying. The simple answer to your question is no. Your father was not brain dead. Nothing you describe is consistent with brain death. Limb movement, spontaneous respiratory effort, gag reflex. All that and more in you story negate brain death. As for labs being drawn to determine brain death I have never heard of that.  Obviously the medical staff, at best bent the truth to help you cope with the reality of the situation. At worst they outright lied to you for unknown reasons.  Now, all that being said, the story you present does not sound like he had a good prognosis. However at only two weeks out from the time of the initial event it's hard to tell.  As mentioned before his heart function may have been severely impaired. I assume one test you mentioned was an EEG. From what you describe I would bet it said something to the effect of "diffuse generalized slowing". Basically it's abnormal but says nothing specific. As for withdrawing care it is hard to say whether it was appropriate or not for a couple reasons. First is that without knowing all the assessments by nurses and docs and the tests and results (tons of info) it's hard to say. Second is that under any circumstance that doesn't include true brain death, withdrawal of support is very personal and everyone sees it their own way. Some feel its never ok. Others feel their loved one wouldn't want to live like that and they fully support and will even fight for that choice to be respected. One thing  to rember that many of us in the medical field say is there is a difference between surviving and living.
Avatar universal
My nana (great grandmother) was a healthy woman in her 90s and she was dancing at a friend's birthday party when she fell and broke her hip so she was in the hospital, then later moved to a rehab facility so she could do physical therapy. while at the rehab place she started getting worse and the doctors said she was drowning internally and there was nothing they could do about it. The doctors admitted to causing the drowning because of how much fluids they were giving her through an iv drip. They said it was not realized until it was too late. It angers me to this day that the doctors could so care less as to cause her to drowned internally and die. She died 4 years ago.
Avatar universal
My Dad is in the Hospital from what started as him not being able to breath to a Heart attack. Now he is in a "Coma".

We waited a week for him to get an EEG which they said was "Inconclusive" He can't breath on his on but he's has slight movement in his right hand twice and he snores all the time. It's been 9 days and still no answers.

They are leaning towards Brain dead but I don't believe he is. Shouldn't they show me more proof than inconclusive?
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