My family's lives changed forever on May 14, 1998 when our son, Jon, experienced a catastrophic bleed due to an AVM. It was the eve of his 19th birthday. He was returning from the grocery store where he had just purchased pop and munchies for his birthday gathering to be held the following evening. By all accounts he had experienced a wonderful day. There were two weeks left until graduation and Jon was involved in lots of end of the year projects at school. That day, he and another student had met at our home to work on a chemistry assignment. The project involved cooking because I got a call at work shortly before noon that day asking how to make frosting! I remember admonishing him to be sure and "clean up the mess" before I got home. Now I wish he were home to make more messes.
Jon's bleed occurred shortly after 3PM. He fell unconscious while driving his car. Fortunately, he was driving at a slow rate of speed and we think his foot must have fallen from the gas pedal. His car slowly veered over the center line, sideswiping two other vehicles. It then jumped a curb and flattened a fence before knocking down a power pole and finally coming to rest in the yard of the local fire station. The car was totaled. Miraculously, no one else was injured and Jon did not received any additional injuries from the accident (at least none that could be determined).
How could he be so lucky to land in a place where he would received immediate emergency medical attention? I can only think that he has a very strong guardian angel. He was taken to the local hospital and we received the phone call that all parents dread and fear — "come to the hospital, your son has been in an accident - we don't know his condition". On arriving, the first thing I heard was a female voice yelling, "breathe, Jon, breathe". At that moment, my heart sank and I knew that something dreadfully bad had occurred.
Within two hours of the bleed we were at a large medical center in Des Moines where Jon had been taken by helicopter. I remember every one of the 70 miles that we drove to be with him. The trauma doctor and neurosurgeon could only respond with "it's bad, it's very, very bad" when we inquired about his condition. They told us that most people do not survive and that the next 24 hours were critical. I suspect that most people reading this story can fill in the blanks to describe our first night in the hospital - the horror and emotional meltdown that occurs. Little did we understand the emotional roller-coaster onto which we had unwillingly climbed.
The next morning we were given the diagnosis. Jon had suffered a catastrophic hemorrhage due to an AVM or arteriovenous malformation. Everyone kept asking us if he had had any symptoms such as headache, vomiting or double vision. I could only tell them what I knew, that Jon had been having a wonderful day and had not complained of anything whatsoever - that day or any days leading up to the bleed. I still cannot comprehend how such a life-altering injury could occur without any warning. Perhaps there had been clues that Jon kept to himself. Eighteen-year-old boys are not usually model communicators - especially where their parents are concerned! Maybe someday he will be able to tell us.
Jon spent 80 days at the medical center, many of those in ICU. He had surgery to remove the AVM on June 2, about two weeks after the bleed. Previous to that, he had surgery to place a permanent shunt and also to revise the shunt when it clogged. Subsequently, he had surgery on his buttock in July to remove infected tissue due to a bedsore that had developed (that never, ever should have happened - but that is another story). During his hospital stay he had numerous respiratory infections including a bout with pneumonia. We began to despair of his ever leaving the hospital. He remained in varying degrees of coma during this entire time. He opened his eyes for the first time 12 days after his injury but eye movement was not normal and it was not know whether he could see.
As I write, we are 168 days into our medical odyssey. Jon is now at a wonderful skilled nursing and rehab facility where he receives much therapy. He is just recently considered to be out of coma and at a level of "emerging awareness". We know that he can see, hear, and comprehend. He is developing some movement in his arms and legs and has regained some small motor movement in his right hand. Because he still has a traech, it is not possible to assess speech but we are hopeful that after its removal Jon will be able to vocalize. Time will tell. The path ahead seems very long and daunting. After 5 months we are beginning to accept that Jon's recovery is impossible to predict. We know that we love him and that we will be there for him in any way that we can. One of our more immediate goals is to have him come home for a day or two so that he can be in his own environment surrounded by his loved ones. It will take much planning and outside nursing help but we are hopeful that it can be accomplished.
I don't know what I would do without the resources, such as this one, that I have found on the internet. Thanks to those of you before me who were courageous enough to post your stories. They have been so helpful and hopeful. Please e-mail me if I can help in any way.
Update 14 Dec 98
Today marks the 7 month anniversary of my son's AVM bleed. In the past month he has made significant strides in his recovery. He appears to be gaining on all fronts, most importantly in his cognitive abilities. For instance, we now know that Jon can recognize letters, colors, and differentiate objects. He recently had an eye exam and, with the exception of a field vision cut in the left eye, his vision is good. For this we are truly thankful. He is gaining purposeful movement in his right arm and is exhibiting potential in his left arm and both legs. The quest is ongoing to find and/or develop communication tools for Jon so that he can gain more control of his environment. His swallowing mechanism is not yet strong enough for the traech to be removed so it is of utmost importance that we devise meaningful communication methods for him. He is able to signify with his thumb a "yes" or "no" response but, as you might expect, this can be tedious and tiring for him.
Jon also communicates with us via body language, particularly facial expression. He is now quite able to show us when he is displeased! The greatest gift of all (at least from his mother's perspective) is the return of Jon's smile. It is still new and not quite the same as Jon's old smile but it is there and it means that Jon's sense of humor is intact. He can still laugh at his mother's dumb jokes!
Three weeks ago, Jon came home for his first visit. What a wonderful feeling it was to have him again in the heart of our home, surrounded by the people who love him and whom he loves. We look forward to many more visits in the future. We will be able to spend Christmas together at his step-sister's home. What a joyful day that will be. God willing, he will attend his sister's wedding on January 2, 1999.
Because of the progress he has made, he has been given the opportunity to continue therapies at the terrific brain rehab center where he has been since August. We are so lucky to have such a tremendous facility only 80 miles from home.
My message to anyone reading this is to NEVER GIVE UP! Even when you are in your darkest hour you must leave open a small crack for hope - for possibilities - for the small miracles that occur with each breath. May the Force be with us all.
Update 26 Apr 1999
On April 18, 11 months and 4 days after his catastrophic AVM bleed, our son Jon began to speak. There is no doubt in my mind and heart that a miracle has occurred and I am nearly overwhelmed by the blessing that has been bestowed on our family.
It was only three weeks ago that Jon's trach was finally removed. Almost immediately he began to make some vocalizations but they were just unintelligible sounds. Still we were ecstatic that he had the ability to make sound. Two weeks after the trach was removed, I was able to coax him into saying "ma" and "bye" and, again, we were so thankful for those two words because we felt that if he could form two words there was hope for the future.
Imagine our incredible shock when, the very next day, he began to talk! He began by repeating words he heard in a movie that he was watching and then progressed to repeating what the staff was saying. Now, a week after he began, he can say virtually anything and communicates beautifully with everyone. This is not to say that his speech is perfect. It will take lots of hard work to improve his articulation and breath support. But he is able to communicate his needs verbally and engage in meaningful conversation.
As if the gift of speech were not enough, Jon is demonstrating that he has excellent long-term memory and very good short-term memory. He has surprised all of his caregivers by naming each of them. Who knows how long he has been aware of their names but just couldn't communicate! His therapists are overjoyed by his progress and still scratching their heads at the seemingly spontaenous recovery of his speech ability.
I know this is getting long, but I just have to let others know that they must continue to hope and pray for their loved ones. Miracles do happen. Keep the faith.
Update 13 Jan 2000
It has been twenty months since Jon's AVM bleed. While our road has been long, Jon continues to recover and has made terrific gains, especially cognitive gains. We have been blessed that he has been able to spend nearly 18 months at a tremendous brain-injury rehab facility. His long stay has been made possible by our insurance and, later, by the Medicaid program which he qualified for through SSDI. Mostly, his longevity in the program has been due to his incredible fighting spirit and willingness to work hard even when the gains were slow in coming. He has never stopped improving and I know in my heart that we have only really begun the recovery process. For those of you reading this, if you have ever been told by the doctors that most improvement will be seen in the first year, don't believe it! In Jon's case it wasn't till about the 11-month mark that he really started to make major gains.
I want to share our joy and happiness that he will be coming home to our community in two short weeks. Jon's next step will be to live in an intermediate care group home which he will share with five other young people with disabilities, ages 13 to 22. It is within walking distance of our home and we will be able to spend so much more time together. We are so incredibly blessed to have a great place for Jon so close to home. Of course, he will be able to spend as much time at our home as he likes. We are going to be a family again!
Jon will continue to receive therapy , although not nearly as many hours as he gets currently. He is beginning to take a few steps between the parallel bars with assistance and can stand on his own for short periods of time. He is completely self-mobile in his wheelchair (he walks it along with his feet). He can transfer himself in and out of the chair and can get in and out of the car with help. We have been able to have him home frequently and also to take him on field trips to the mall, etc....
Jon is happy most of the time. His sense of humor is already legendary among his family and caregivers. The staff at his rehab are dreading his departure as he really lights the place up. I am so proud of him! Yes, I still miss my "old" Jon but this new guy is wonderful too!
Jon has not regained his ability to swallow normally and, thus, to eat. But he can speak very well. While I am sorry he can't eat normally, I am so thrilled that he can speak and communicate. Interpersonal communication skills were Jon's strong point before the injury and those skills are so fundamental to his emotional well-being.
It has been an incredible journey and we have all learned so much about ourselves along the way. It is a terrific irony that such a dreadful tragedy could also bring forth joy, happiness, faith and wonder. I will repeat my earlier plea - never, ever stop hoping. Life insists on persisting!
Update 21 May 2001
One week ago today, we marked the third anniversary of Jon's AVM bleed. The very next day we celebrated his 22nd birthday. For the past sixteen months he has lived at an intermediate care group home in our community. Happily, he continues to make progress in most areas.
Jon is now "soloing" with a walker. He is even learning to step up and back down on a low platform and taking steps backward. He can now transfer himself in and out of the car without any assistance, which is a major accomplishment. Our little rule is that Jon must do for himself whatever he is able and we continue to give him strong (grin) encouragement toward greater independence.
For fun and exercise, Jon is now riding a special three-wheeled bike and is a bit of a daredevil. Soon he will begin private swim lessons at the local YMCA, which we hope will lead to even more gains in balance and mobility. He maintains a remarkably positive attitude and his care givers always say that he "lights the home up" with his good-nature and jovial ways. I think that this is his gift to the rest of us.
Jon attends a vocational workshop during the week. If you ask him if he is working hard he will reply that he is "hardly working" with a laugh. His unofficial job title is social director. He talks about going back to work someday at the grocery store where he worked while in high school. I believe that he might achieve that goal someday. There will come a day when he will outgrow his current living arrangements and we are beginning to gather information about assisted living alternatives.
Surprisingly, Jon still cannot take food orally. But after a long, long battle with our insurance company, we were able to get him a really small portable pump that he wears in a fanny pack around his waist. This has made a huge difference in his life as he no longer needs to be tethered to a pole during feeding.
The past three years have been a long, strange journey. Looking back, I'm not sure how we all survived it intact. We are fortunate that, through it all, our family has become a stronger unit. We continue to be amazed at Jon's progress, particularly when we were told early on not to expect much after the first year following injury. Oh my, they were so wrong! So to all of you on the AVM path, keep moving, better days are just around the next curve.
Update: 28 Apr 2002
In three short weeks we will celebrate Jon's 23rd birthday and also mark the fourth anniversary of his AVM hemorrhage. I am pleased to report that Jon continues making progress in all areas. About eight months ago, he moved to a different group home facility three hours from our home. It was a difficult decision for us to make but he just wasn't getting what he needed, physically, socially and cognitively, in our small community. His new group home is fantastic and is specifically designed for young people with brain and spinal cord injuries. He shares a beautiful ranch home with three others with similar challenges. During the week, he attends the facility's community center where he engages in speech, occupational, physical, cognitive, vocational and recreational therapies.
While Jon continues to be ataxic he can now walk the perimeter of a gymnasium with his walker and minimal assist. Fine motor skills have improved and his left arm and hand are much more functional. Jon continues to receive his nutrition enterally due to problems with the oral phase of the swallow but he is able to eat a small amount of pureed food daily. Regular video swallow studies show slow but steady progress in oral control. He works with a very kind and patient speech therapist who believes that, in time, his oral intake can improve.
Cognitively, Jon has made great progress. His attention span is much improved and allows him to stay on task for longer periods. He is more oriented to time and can now consistently state the current day of the week and month. He has no problem being oriented to place and people. He works on cognition with computer programs, word association games, and a reading comprehension class. At his home Jon has many responsibilities including doing his own laundry, cleaning his room and helping with the housekeeping of general living areas. One of his current goals is to become more independent as he goes about his daily activities i.e. getting himself to the right therapy areas at the right time with little or no cueing.
I cannot say enough good things about the residential staff and therapists at his new home. They are truly dedicated to helping each person find dignity in living and achieving the highest level of independence possible given their individual challenges. Jon is so incredibly happy there and his good humor, wit, and willingness to keep trying endears him to everyone.
I miss him acutely but we stay in touch over the phone several times a week and I see him about every two months. He has been home for one visit since moving and will come home again in June for a few days. It truly has been a weaning process for both of us, probably more for me than for him! Letting go is so difficult but it is time to let Jon define his own life on his own terms. I am so proud of him. We still don't know what the future holds for Jon but, whatever comes, we will continue to face it together as a family. A very grateful family.