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557

557

The words I love you were the last words said as I walked out the hospital door.  Turned out to be the last words I would say to my father ever again to his face. My visit was a surreal that day; we watched a Yankee game together, which was always the special bond we shared. They lost to the Toronto blue jays.  He realized that he no longer had the strength to push the nurse’s button and was panicking. That button was his life support; it was the only way he could get the nurse’s attention. My mother and I did all we could to calm him down. We found a new device where he could slide his finger over.  Amyotrophic lateral sclerosis (Lou Gehrig’s disease) is neurological degenerative disease that won’t allow your muscles to follow the direction they are given.  It leaves you a prisoner of your own body, as your mind is fully functional.  That one finger was the only muscle that still worked. The next morning at 9:37 am he passed away 557 days after he first went into respiratory crisis and lived solely by a ventilator.

THE CRISIS
It was super bowl weekend of January 2004; I was getting ready to leave for Las Vegas for the first time with a bunch of friends. This trip was planned for almost 6 months and I was excited. I stopped at my parent’s house to say hello and wait for the car service to pick me up. Dad had been sick for several months but no one knew what was going on. He had been let go from both jobs and the tension between my parents was unbearable.  He was talking gibberish that evening and I was not comfortable leaving him. My mom told me that everything would be fine and that I should still go, I needed to get away and it was only 4 days. I had this strange nervous feeling in my stomach but the car arrived and I got in. My friends were already wild and eager to get to Vegas. I was quiet and no one why, except for my friend Vic. He asked if I still wanted to go and I said  “Yes, I will be fine”. I figured once I was on the plane I would be ok. We boarded the plane and I still had that feeling in my stomach.  I kept thinking that I made a mistake and should be home with my family. The plane departed from the gate and I had no choice but to go now. As the plane took off I can hear my friends get more excited. They must have drank every little bottle of alcohol on the plane during the flight. And as my stomach had more of an uneasy feeling I got sick, that never happened to me. I embarrassed and blamed it on the alcohol and the food at the airport while we were waiting board.
We were beginning our decent into Vegas and as I saw all the lights of this city, the adrenaline started to begin and was finally getting back to myself. Right after we landed I called home which was 3am local time and my dad answered.  He could not sleep and was having hard time breathing. I told him to take it easy, just relax and I loved him.  Tell mom I landed safely and would be in touch.  Looking back it will be the last time I ever heard his voice.
We partied like rock stars right from the start.  We got two cabs and started our night. Without checking into the hotel, we hit the strip.  We all worked in the entertainment business and had a lot of friends who lived in Vegas that ran all of the hottest nightclubs.  It was now 6am we finally checked into the hotel with already a few drinks and pocket empty. We all went our separate ways; Vic and I stayed together and decided we should play the blackjack tables. While we were having a good time, we were delirious.  By 9am we figured let’s get some sleep, we still have 4 days here and I was already down $1600.
The rest of the guys came to our room around 11 to see what the plans were. Four of us were going to play golf in the afternoon so we were going to take it easy until then.  I was lying on the floor ready to pass out and Vic’s phone rang.  He walked out of the room; not thinking much of it. His phone was always ringing and it could have been his wife.   When he came back in he had a very concerned look and asked everyone to leave except for me.  I thought something happened to his wife or one of the kids so I immediately asked what happened. He told me to sit down that my sister called him and said that I needed to come home, but would not tell me why – even though I kind of knew.  Grabbed my suitcase since I did not even unpack and went to the lobby. Vic grabbed his as well and told me that he was not letting me fly home by myself.  Inside I was panicking but had to stay strong until I knew exactly what happened.  He called his wife and told her he was coming home. Not to often in life do you find friends like him. Vic took care of arranging the flights and a ride home back to New York.  Joey came to pick us up, who is always there for my family. We drove him back to work while he let us take his car to Stony Brook hospital. They allowed me to go up to ICU after hours where my father was laying comatosed on a respirator.

DIFFICULT ROAD AHEAD
It is an image I will never forget, seeing my father this larger than life person lay in a bed with tubes and machines keeping him alive. I was in shock and could not believe what I was seeing. It did not hit me until I dropped Vic off and I saw my mom.  I have never gripped someone so hard in my life. I was scared to let her go that something would happen to her, but at the same time I could only imagine what she was feeling. This was her husband of nearly 39 years and I was not there during the time she needed me. I could not sleep as tears ran down my face, we talked for hours.  Told funny stories about dad, but also what happened after I left.  All the gossip of which relative embarrassed her in the emergency room and everything in between.  I finally was able to get some sleep.  When I awoke I saw my sister and the three of us drove right to the hospital. Reality slapped me in the face. During that short sleep I thought this was all just a bad dream and I would wake up to see my family. That did not happen, I found myself starring at my dad while he was in an induced coma.  During the ambulance ride from the house to the hospital, they had to intabate him.  The disease shuts down your lungs, which usually happens much later in the disease takes, but my fathers case was rare. At this point no one knew what was wrong with him. Doctors of all practices were coming in and checking him.  Almost two months prior to this dad had been in the hospital for a month with tests and procedures. The neurologist was checking for all autoimmune and neuralgic diseases. The doctor at Stony Brook is a leading specialist in ALS and told us that this not a case of that but needs further testing. Now he is respiratory crisis, which confused the doctor even more. He was adamant that this was not ALS.  I remember being confused and not knowing what to do.

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