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Old 05-17-2013, 03:16 PM   #1
Southerngirl71
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Had to make a decision about life support...

I am going to try not to make this very long but I don't think I will be successful.

I am the youngest of 6 kids. My older sister was 20 years older than me. Our dad died when I was 15 of a massive heart attack and my older brother stepped in and helped my mom support and raise me.

My brother died during open heart surgery when he was 49. He was truly like a second father to me. He helped me buy my first car and walked me down the aisle when I was married. I took his death pretty hard but not as hard as my sister.

My sister had a colonscopy and endoscopy in November. She was suffering with stomach pains after the procedure but nothing major. She also had a very low tollerance for pain. My mom got a call that my uncle was about to pass away and that if she wanted to see him to come now. She was gone for about 3 hours. During those 3 hours she called my sister to check on her every hour. The last hour she sounded very sleepy and my mom could barely understand her. When she got home she could not wake her up. She was taken to the hospital and we found out she suffered a major stroke.

They did an emergency procedure to open the blockage in her head and we were told it was a waiting game. We were told by the neurologist that she would probably never regain use of her left hand but could possibly be walking on her own in about a year. She never woke up but would respond to our commands by squeesing our hands.

The next day she would not respond to commands. They did an mri and said her brain was swelling. The neurologist said if they did not do surgery to remove part of her scalp she had less than a 10% chance of making it so we had the surgery. They did another mri the next day and her brain was continuing to swell. The nurses in ICU were preparing me for the worse but the neurologist, who just told me if her brain continued to swell she would not make it, was telling me she could still pull through. The nurses were telling me they have never seen someone in her condition pull through. I slept in a chair in the waiting room for three days when my husband talked me into going home to take a nap. I was not home an hour when my brother who was releaving me at the hospital called and said to come back because we needed to talk. The neurosurgeon came in when I left and told my brother that basically her brain was dead and we needed to make a decision about removing life support.

We made the dicison that she suffered enough. My nephew was the one who had to sign but he kept asking me what to do because I was the one everyone in my family always turns to for everything. I said I thought it was time to let her go. The nurses and neuro surgeon agreed but the neurologist did not. The neurosurgeon went as far as to tell me they have had this problem before with the neurologist giving families false hope and that the neurosuregeons were the ones who actually looked at her brain when they removed her skull and that if she were their family member they would let her go. We disconnected life support and she passed away a couple of hours later.

I am so haunted that I made the wrong decision. We should have just waited. It is hard to think about anything else. I feel like I killed my sister.

Thanks so much if you read this lonnnnnnng post. I am not even sure why I wrote it. I just hope that eventually I find peace with my decision.
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Old 05-17-2013, 08:30 PM   #2
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Quote:
Originally Posted by Southerngirl71 View Post
I am going to try not to make this very long but I don't think I will be successful.

I am the youngest of 6 kids. My older sister was 20 years older than me. Our dad died when I was 15 of a massive heart attack and my older brother stepped in and helped my mom support and raise me.

My brother died during open heart surgery when he was 49. He was truly like a second father to me. He helped me buy my first car and walked me down the aisle when I was married. I took his death pretty hard but not as hard as my sister.

My sister had a colonscopy and endoscopy in November. She was suffering with stomach pains after the procedure but nothing major. She also had a very low tollerance for pain. My mom got a call that my uncle was about to pass away and that if she wanted to see him to come now. She was gone for about 3 hours. During those 3 hours she called my sister to check on her every hour. The last hour she sounded very sleepy and my mom could barely understand her. When she got home she could not wake her up. She was taken to the hospital and we found out she suffered a major stroke.

They did an emergency procedure to open the blockage in her head and we were told it was a waiting game. We were told by the neurologist that she would probably never regain use of her left hand but could possibly be walking on her own in about a year. She never woke up but would respond to our commands by squeesing our hands.

The next day she would not respond to commands. They did an mri and said her brain was swelling. The neurologist said if they did not do surgery to remove part of her scalp she had less than a 10% chance of making it so we had the surgery. They did another mri the next day and her brain was continuing to swell. The nurses in ICU were preparing me for the worse but the neurologist, who just told me if her brain continued to swell she would not make it, was telling me she could still pull through. The nurses were telling me they have never seen someone in her condition pull through. I slept in a chair in the waiting room for three days when my husband talked me into going home to take a nap. I was not home an hour when my brother who was releaving me at the hospital called and said to come back because we needed to talk. The neurosurgeon came in when I left and told my brother that basically her brain was dead and we needed to make a decision about removing life support.

We made the dicison that she suffered enough. My nephew was the one who had to sign but he kept asking me what to do because I was the one everyone in my family always turns to for everything. I said I thought it was time to let her go. The nurses and neuro surgeon agreed but the neurologist did not. The neurosurgeon went as far as to tell me they have had this problem before with the neurologist giving families false hope and that the neurosuregeons were the ones who actually looked at her brain when they removed her skull and that if she were their family member they would let her go. We disconnected life support and she passed away a couple of hours later.

I am so haunted that I made the wrong decision. We should have just waited. It is hard to think about anything else. I feel like I killed my sister.

Thanks so much if you read this lonnnnnnng post. I am not even sure why I wrote it. I just hope that eventually I find peace with my decision.
Lori,

I am so incredibly sorry. Sorry for your losses. And sorry that you had to go through these tremendous decisions with loved ones.

__________________________________________________ _____

I'm going to share some things only hoping that they *might* stir something in you for the good:

I have been through times with surgeons and other doctors to know that they have situations where their personalities impact their words - the cross talking - the conflict of thought with other colleagues etc. I don't want to go into too much information as it's close to home.


I've had an intimate situation where two neurologists over a ten year span misdiagnosed an issue. And that mistake impacted the surgeon's decision. A surgeon who thought differently but looked to his colleagues in neurology. And progressed dementia in a loved one.

So please know that these two neurologists, one would hope, would be horrified that they were wrong and so *sure* of themselves - almost pompous about it all. They're human. And they were wrong.

Stop focusing on the neurologist. Focus on the surgeon and the nurses and their words.

May peace be with you around your sister and her family.

I'm so sorry for your loss.

________________________

Plus, I'm sure I'm pushing boundaries here - so my apologies in advance. But I'm sure your sister would be livid that you are suffering so severely with all of this and such a difficult decision. I'm sure she wouldn't want that for you. Love to you.
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Old 05-17-2013, 08:47 PM   #3
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{{hugs}}. You made a very hard decision that will always make you second guess and you had your sister's pain and suffering to think about.
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Old 05-17-2013, 08:54 PM   #4
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My heart is so heavy for you. You certainly have suffered a lot of loss

I can't imagine how difficult a decision that was.. I think I would like to think of what if that were you? If it were me, and I was in such a state, I would hope for a loving sister such as yourself, to grant me the peace I needed..

Do they offer you any type of grievance therapy?

I am so incredibly sorry, and send out tons of giant love and hugs in support
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Old 05-17-2013, 09:37 PM   #5
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.....I am so sorry.

I can understand where you are coming from when others in the family look to you for the answers..the pressure can be so difficult...and hard.

Such a difficult situation...let me tell you though that usually neurologists 'think' they know the best or have the answer, but in the end..it is the actual surgeon usually and even the nurses who have seen similar situations over and over again who can tell you the real story. Quick example from my own experience: I had 4 supposedly of the 'best' neurologists who thought they knew exactly what I had and how to cure it.

Neuro #1: told me I had a stroke or ALS- wrong
Neuro #2 : told me I had ALS ( wrong) then took it away and said it was a ' brain malfunction that would cure itself in a year.- wrong again
Neuro # 3: Diagnosed me with Hunigtons disease, Wilson's disease, movement disorder, and finally told me it must all be a conversion disorder and in my head- all wrong
Neuro #4 : ALS, MS, vitamin deficency, psychogenic disorder...again all wrong

I had one ob/gyn specialist surgeon who actually suspected and knew immediately what I had...and confirmed it through ultrasound, MRI, and finally surgery. ( severe endometriosis by the way that has spread throughout my body and caused all my symptoms)

I am so sorry about your sister...and with that said...I think you made the right choice. I know if I was In Your shoes and had a surgeon and nurses (who take care of the patients the most) say it was best...I would have done the same. It is of course always human nature to say the what if question..and it will take time to be accepting of your decision. ( if you didn't have a second thought about it then I would worry!

Your family is definitely in my prayers...hang in there.
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Old 05-18-2013, 10:23 PM   #6
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Working in the medical field , in respiratory for that matter, I am confident they would not have suggested you take your sister off life support (ventilator) unless they had facts to back it up. They most likely did an apnea challenge on her, along wit out other brain function tests....just to clarify to Hun brain dead is clinically dead. You did not kill your sister, Hun she was already passed....I know it was a tough choice Hun but I know you did the right thing. Hugs
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