Hi everyone,

I have been out of the loop this past week.

My oldest brother, who is 38, had a heart attack a little over two weeks ago. He also had a seizure and aspirated vomit into his lungs.

He has been in a medically induced coma and on life support at the VA Hospital (god what a hell hole) in Birmingham since that time.

I took my mother over last Wednesday to see him. The doctor came in and told us that we needed to decide how long we wanted to keep him on life support...that the longer he stayed on the worse his quality of life would deteriorate. He also asked us about a DNR (Do Not Resuscitate) order.
He said every time they lowered the sedation meds he fought and tried to pull his breathing tube out. Once he succeeded and it took them 30 minutes to get it back in.

I was devastated. This was the first time I had seen my brother since this happened and the first thing the doctor says is that he is not improving and that we need to start thinking about discontinuing life support.

Mom and I called the rest of the family and told them what the doctor had said.

I did not really know John’s wishes in this situation. I assumed that if he were to be a vegetable then he would probably prefer not to be at all. That is a hell of a decision to have to make.
Turns out I was wrong about that and should have known better. I asked his girlfriend later and she said “Loretta, John has always told me that if something like this ever happened that we better not cut off the machine….that his exact orders were “to squeeze every goddamn ounce of life out of me that you can get”
And that is so typical John.

When I think of someone who is about to die I generally think of a gray hull of a person, drawn, shrunken and almost completely void of human life. I did not sense this from my brother. His color was very good. He didn’t look gray or drawn. He looked asleep. Granted he had a tube or a needle in every orifice in his body, he has a machine breathing for him, and he is on some of the strongest drugs known to mankind…he still looked alive.

I started to think about everything I had ever heard about people in comas and on life support. I knew that we should talk to him and touch him because it is believed that they can hear what you are saying.
I also tried to think of some things that John is really fond of.
He is a HUGE Willie Nelson fan and he plays guitar and sings country music. I decided I would get him a tape player and his favorite Willie tapes as well to see if I could get a response.

Mom and I went back to his room and I asked the doctor to start taking his sedation medication down and let me see if I could get a response.
I took his hand and got down very close to his face. I started running my other hand through his hair and calling his name very softly. I told him I loved him and that he was too young to die. I told him that mom and I were there and to please wake up or do something to let us know that he could hear us. Mom was a wreck…I’ve lost a child so I know what that feels like to her.

We both just kept talking and touching him and his foot began to twitch. I called his name again.
“Brother” has always been my pet name for him so I started calling him that and just repeating over and over that we were there. I also told him not to try and pull his tubes out or he might die….to lay very still.
At that point I wasn’t sure if his movements were just muscle twitches that were natural and not indicative of someone in a coma waking up.

All of a sudden big huge tears began to roll down his face and I said “John?”
I knew right then that he was still very much alive. He moved his arm a little.
My mom said “Loretta he’s crying!”
And we both said “Oh thank God!”

I started talking to him again telling him to be still and not try to move or talk. That he was very sick and in the hospital and on life support. That we were there and we loved him.

He was struggling to lift his eyelids and it looked like it was taking a Herculean effort. I wanted to see his eyes so I reached down and gently opened them for him. He focused immediately on me and then he really began to cry. His whole body was shaking.

The nurses and doctor came in and asked us to step out for a little while because his monitors were going crazy and he did not need to be that excited.

So we left for about an hour called the rest of the family again and reported what had happened and went back. They had had to sedate him again to get his heart rate under control. But as soon as we walked in and called his name his eyes stared moving. Looked like REM’s .

I told him we couldn’t stay long because he was getting too excited but that we would come back tomorrow and I would bring him some Willie Nelson to listen to. I told him I would get a hotel room the next day and take command of his medical care as I did not feel he was getting what he needed. His whole body was swollen and he had been given no diuretic. He had not been given even the most basic physical therapy and his muscles had begun to atrophy.

My sister was on her way to the hospital and I told him she would be there a little while after we left.

Later when I talked to my sister she said she had gone in and talked to him and that he had smiled. She stayed the night and the next day my mother and I went back, with Willie in tow.

The three of us went in and he opened his eyes right away. And smiled! I told him I brought him some Willie and he smiled bigger. I asked him if he wanted to hear it and he blinked his eyes. So I put it on. Ironically, the first song was “I Gotta Get Drunk and I Sure Do Dread It”. Alcohol is mostly responsible for the condition that John is in.
But it was funny too because he seemed to be trying to laugh outright…with a damn breathing tube down his throat. I knew that Willie had hit the spot and that John’s keen twisted sense of humor was still very much intact. I considered that to be the best sign of all that he would recover.

The nurses taped the player to his bed and turned the tapes for him in between visits.

We got physical therapy started on his hands, arms and legs. Splints, range of movement exercises (which we did ourselves) and we cleaned him up as much as we could as he is meticulously clean when he is in control of his person.

All the second day he went through periods of smiling and crying. He seemed to be in a lot of pain and he was not receiving anything but ativan for breakthrough pain. Ativan is an anti-anxiety drug and not a pain medication.

John has a really bad back, broken tailbone and has had the meniscus (part of the knee) in his right leg removed. He is used to large daily doses of pain medication. I also figured that his breathing tube had to hurt like hell. I mean that really cannot in any way be comfortable.

I talked to his doctor about pain meds. They did not know about his back and knee problems even though all of his records are on file at the VA Hospital and he has been going there religiously for years.
They even had him listed as homeless and indigent even though he drives a Cadillac and owns his house. Apparently no one bothered to see if he was a VA patient, which is mind-boggling considering that he wouldn’t have been taken to the VA Hospital if he weren’t a vet. They never checked his records.

I got them to start giving him morphine through his central line and then they put him on a fentynal patch which is continuous pain relief that lasts three days.

The nurses in CCU named my mother, sister and me “The Calvary”. They were all amazed that John had improved so much in two days and commented that they had only heard about stuff like that on TV.

I stayed one more night and am now back home for a few days. I have other members of the family on rotation so that someone is there with him all the time.

Yesterday he had improved to the point where he could shake his head yes or no in response to questions, he was still smiling and trying to laugh out loud in spite of that tube in this throat.

He has a long way to go but I don’t have any doubts now that he will recover.

A few things I have learned this week.

Everyone should have a living will drawn up. That is a horrific decision to have to make when you really aren’t sure what your loved one would want in that situation.

Sometimes people in comas really can hear you…so if you ever find yourself in this situation remember the power of your touch and your bond and your voice. Bring the person things that they really appreciated before. Talk about mutual memories.

Laughter and humor really are good medicine.

Never underestimate the power of Willie Nelson and the love of your family.

That said, I hope this never happens to any of you. It is quite an emotional roller coaster.

Thanks for listening while I got this out of my system. Please excuse the minor profanity included in this story. I couldn’t have told it properly without some of those words.

Loretta

P.S. I would like to thank Marc Emery for making it financially possible for me to be able to spend time taking care of this serious family matter.