Ok, here it goes, I have been putting this off for a long time and now it is time to just write it all down and maybe help someone else. A little history before I start. My name is Pat and I live in New York. Our family consist of, My brother Jimmy, his partner Patrick, my husband Bobby, daughter Danielle, and myself. We all lived in a two family house, together for 10 years. In May 1996 my brother Jimmy received his Master's degree. He is the first family member to accomplish this and we are all proud of him. Jimmy had a good job in New York and was offered a better position in Philadelphia, a regional office. He accepted and with both happiness and sadness he got himself an apartment in Philly. He moved on July 1, 1996. He was happy and Patrick planned on joining him the following month.
Jimmy had been complaining about, a funny feeling in the right side of his head, he said it felt like something was moving. He started to eat aspirins like they were candy. I found out the amount of aspirins when I arrived at his apartment in Philly. I spoke to Jimmy about 10:00PM and he sounded good, he said that his head was feeling better and he was practicing a presentation for work that he was giving the next day. I worry all the time so that night I said to myself, "All is well, Danielle and Bobby are asleep, Patrick is home and Jimmy is in his apartment, everyone is where they should be and I will sleep like a log."
At 10:45PM, on September 9, 1996, my phone rang it was Jimmy and at first I did not recognize his voice. He said that something was terribly wrong and that he had called 911. I kept him on the phone and called Patrick upstairs..Patrick told Jimmy to make sure the apartment door was open, so the EMTs could get in, and to bang on a neighbors door to try and get help. At this time Jimmy was losing control of his right side. His arm and leg were convulsing out of control and he had started sweating profusely and vomiting.
Thank God a neighbor, who Jimmy had just met, was home. Her name is April and she kept us informed of what was going on. When EMTs arrived they decided, in all there wisdom, that Jimmy had "eaten something bad" and they would take him to the hospital. They never took his blood pressure or any of his vital signs. Unassisted, he walked down a 30 ft hallway to the elevator. April was a witness to this and later put in a complaint as we did.
The next call was from Jefferson Hospital telling us that there was "bleeding in the brain"" and Jimmy was being transferred to Will's Eye Hospital where they specialized in Neurological problems. It was suggested that we leave and get to Philly as soon as possible. It did not look good.
How did this happen? As I sit here trying to write this I find myself crying. I do not think we have every really dealt with what happened next and what is still happening now. Patrick and I left NY on the first train out and arrived at 5:26AM. We took a cab and found our way to the hospital...Will's Eye. I will never forget this time in mine or Jimmy's life. We were taken to the waiting room on the 6th floor. It was dark and cold and a nurse gave us some coffee. I remember being very scared, but I wanted to know the truth, no sugar coating. Patrick was afraid to hear the truth, he was so frightened he did not know if he could handle it. The nurse explained that is was very serious and that there was a good chance that Jimmy would die.
We waited for the doctors. Dr. Rossenwasser explained that Jimmy was a very sick young man, he was 39 at the time, and they did not know if he would survive. He had suffered a massive bleed. At the time they thought it was an aneurysm. Later it was found out that he had a AVM. Jimmy was on a respirator and I asked why. I was hoping that the doctor would say it was precautionary, but that is not the answer I heard...Jimmy had stopped breathing.
We were taken to his room; Oh God, I wonder now with tears in my eyes how we did this. Jimmy was hooked up to everything you could imagine. They told us to hold his hand and talk to him. It was hard to find a place to touch. He looked so bad, so scared; God how I loved him at that moment. Since our mothers death I have felt like a surrogate Mom and now I felt that my heart would rip out of my chest. The pain was indescribable...God help us...Is all I could think.
I met Dr. Rossenwassers associate in the hallway and held his hands in my own. I told him that Jimmy was a real person and if we had to bring him home in a basket that was Ok. He would get the best that life had to offer him. Just keep him alive. The doctors had to put in a tube, coming from the right side of his head, to help drain out the blood. This was on Wednesday.
On Thursday Jimmy was in and out of a coma, not really talking or responding. The respirator had been removed. So on Friday, they did surgery to put in a shunt, this would allow the blood to empty into the stomach. Jimmy slowly began to talk, he remembered it all, the entire thing. He had no memory loss. The doctors had told us about something called vasopasms, we were told that this could cause immediately death. There was nothing they could do to prevent these spasms just watch and wait. We were told that the usually occur between the 7th to 10th day. So by day 11 we were happy to be over that fear...this was not to be the case. On the 13th day Jimmy began to have vasospasms. He continued to have them for the next month. The numbers were very high and we lived in a constant state of panic. Jimmy was unaware of the spasms and did not cause him any discomfort. Jimmy also began to hiccup, and hiccup, and hiccup. He hiccupped for the next two months. Now I realize that this sounds silly but it became a very serious problem. Because of this he was unable to eat, so he slowly began to lose more and more weight. Soon he looked like he was starving to death. It was a horror.
It was discovered that the shunt was causing a fluid build up in his stomach lining so they did surgery again to correct the problem. But after the surgery the hiccups continued. So the starving continued also. My sister, Jackie, who lives in Alabama came to stay in Philly and try to get Jimmy to eat. She is the oldest and Jimmy loves her very much. He was so happy that she was there. She gave us all a support system. Patrick never left Philadelphia, he gave up his job in NY and said that he would stay in Philly until he could bring Jimmy back home to New York. He was under so much pressure and he rose to the challenge. He never faltered, he remained calm and supportive, full of love and hope, he was Jimmy life line. His devotion was a wonderful thing to witness, such love and caring. God can show you wonderful things even as your life if falling down around you. Patrick if you ever read this..."Thanks and I Love You"
Now the HMO was starting to give us trouble. I do not want to spend to much time on this but they caused this family and Jimmy a lot of panic and fear. Since I am the one with the big mouth, in this family, I fought them and threatened them, and did it some more. Then Jimmy was starting to get pains in his chest so they transferred him to Jefferson Hospital. and now there was a new series of problems, so the HMO backed off. I wonder if the doctor did this for that reason. I think so, since Will's Eye was considered acute care and Jefferson was not, thus the billing would be lower. Dr. Rossenwasser would remain Jimmy's doctor, since he was on staff at both hospitals.
The doctors discovered that now Jimmy had developed clots in his right leg. The clots started to move, so another surgery was done to put in a filter, that would stop the clots from reaching the heart of lung, if they ever traveled.
Jimmy had a AVM. We were told that it was a birth defect, a artery and a vein were connected. Veins pump blood at 10 miles an hour and arteries at 100 miles an hour, so Jimmy's finally blew, and acting like a hose it shot blood all over the brain. Most of Jimmy's damage was in the cerebellum. That part of the brain controls things like vomiting and hiccuping and of course other stuff. But now Jimmy was receiving morphine to try to stop the hiccups and allow him to eat. By this time he was scared and afraid to eat, when he ate he vomited and that caused his head to hurt. He was afraid of a re-bleed. Because he was in such poor condition they were postponing surgery, trying to get his strength up and his weight.
Many more things, all horrible, happened but I will not go into all this...because many of you have been there already. Then a miracle of sorts happened. Jimmy became very ill, he was seeing double, he was vomiting badly, he was suddenly going downhill, fast and furiously, or so it seemed. They rushed him to have a emergency MRI and guess what...the AVM was smaller! It had closed itself off and appeared to be destroying itself. The symptoms he was having was from being dehydrated. How that happened in the hospital is beyond me, but who cared. The news was both startling and good. The following day they did a angiogram and it was confirmed that the AVM appeared to be closed off and no surgery was needed at this time.
Jimmy started to cry, just like the rest of us. Suddenly Jimmy was coming home. As we stood there we were told that he would be released the next day. I had to rush back to NY and get a room ready for him. Patrick and my sister had to pack up an apartment. A good friend of Jimmy's, Steven, who had been there through it all came down to take Jimmy Home.
People become institutionalized, and Jimmy was no exception. He had been in the hospital for so long he was scared to leave. But he had a great support system and off he went. My family is of Irish decent and my Mom always believed in caring for sick ones at home. So we fattened Jimmy up with all our comfort foods; you know things that our Mom feed us when we were kids and sick at home. IT WORKED! Jimmy began to eat, and keep it down. He gained his weight and strength back. Now none of this happened over night, but it happened. And Jimmy, who could not walk into the house on October 30, 1996, began to walk with the aid of a walker. Then he started to use a cane. Then we practiced going up and down the street with no aid at all. I never thought I would be so happy just to have the pleasure of taking a small walk with my brother. But it was the most joyful experience in my life.
On July 1, 1997, exactly one year from his first move to Philly and ten months from the bleed, Jimmy and Patrick relocated back to Philly. I am sad that they do not live here but I am happy that they have gotten there lives back. Jimmy still has deficits; problems with double vision and with his balance. Only time will tell if he will ever return to work, but he has a life...his own
Update 11 Sep 1997
Today is one year for my brother and things are great...last Saturday he called me in the morning to say that he was going to take a nap and not to worry if he did not answer his phone. Two hours later I heard a car horn outside my house and when I looked out the window I saw Patrick standing there...It took me at least a full minute to realize that the driver was JIMMY...he had driven for the first time and had made the 2 hour trip just fine...He hopes to return to work, on a part time basis, this January....His double vision is now totally gone, his balance is better but still a problem when he stands up..so he figured that if he was ok sitting down...he could drive a car..and off he went.. We are thankful for all the wonderful recovery that has taken place in the last 365 days...and hope that a total recovery is in the future..the doctors will not say but we believe that if God could heal him to this point he will finish the job..
Update 15 Sep 98
This is the second year of recovery for Jimmy and I want to update you on what has been happening and a lot has....Jimmy was doing very well ..but in November 1997 he stated to notice that his walking was not good..and getting worse all the time..Jimmy and the rest of us were afraid that this was being caused by a re-bleed. Jimmy was scheduled to have an angiogram on April 28th 1998, yes it went on that long before we did anything about it. Denial is an enemy and we were all in it. The doctor that Jimmy was seeing felt that his problems were muscular and so he started Jimmy on physical therapy. But we let this go on too long. The therapy was not helping and in March Jimmy's hands started to club up, and he started to have uncontrollable shaking of his legs. So finally we went back to the original neurosurgeon, Dr. Rossenwasser, and he set up the angiogram. But first he had Jimmy have MRI's of the cervical spine as well as the brain, THANK GOD. It was discovered that Jimmy had severe compression of the spine and was less than 24 hours from being paralyzed from the waist down and his hands.
He was rushed into Thomas Jefferson Hospital and had a 5 hour surgery on his spine. They took part of his hip and fused it into his spine and put a metal plate in. He has been recovering from that and doing well. The angiogram was done on August 13th 1998 and believe it or not the AVM IS GONE...GONE ...GONE...GONE. So now we have to work on the walking but this is being caused but the spinal cord compression. If we were not so afraid, if we had not been in denial, maybe we would have caught this early, but that is not how the story goes so we will plod along and work on recovery from this surgery. Jimmy has developed Clonus, which is a uncontrollable shaking but the doctors say that it might go away as he recovers. So the end of this saga is that Jimmy now has been given A CLEAN BILL OF HEALTH. He will continue to recover and hopefully resume his life again. Patrick is still the tower of strength that he has been since the beginning.
I want to say thank you and I love you to both of them...and to all the neighbors and friends that have prayed and given us strength thru out this last two years. Thanks to all of you...and to the people on this support page that have written and shared there personal experiences with me. Some of you have been in touch with me from the beginning and I want you to realize that everyone of you have help me and our family. Love to All
Author no longer active 3/14/2011