My name is Christi. I am the proud mother of a seven year old daughter and a nine year old son, named Jason.
Jason awoke as usual and got ready for school on February 12. At 7:20 he complained of a headache, a first for him. I called the neighbor at 7:30 to arrange transportation for my daughter to get to school because he was in such pain. I called my husband, Glen and carried Jason from the house unconscious at 7:40 and arrived at the hospital at 7:45. By 8:00am, the CT scan had been done and showed bleeding in his brain. The ER doctor said he would have to be flown to Sioux Falls since Aberdeen wasn't able to handle his condition. I left the hospital at 8:15 to get Katy, pack clothes and make phone calls. Jason's helicopter lifted off at 9:05 am. I'm relating these times only to show how rapidly everything happened.
Jason arrived at McKennan hospital, in Sioux Falls, SD a little after 11am and we got there a little after noon. By the time we arrived, an angiogram had been scheduled to determine the cause of the bleeding. This test showed a congenital condition called an "arteriovenous malformation" in his brain. I am still not sure of the exact location, other than it is in the center of his brain and therefore cannot be operated upon. We had no knowledge of this previously since he has always been so healthy. The following days were spent "waiting to see what happens" in the ICU.
Since Jason was on a respirator, he was given a drug to immobilize him. He was unresponsive to stimulus on the right side of his body. By Thursday evening he was stabilized, but doctors said he would probably be in rehabilitation for 3-6 months trying to regain the use of his right arm and right leg. They also suspected there would be great language problems.
Jason spent 6 days in ICU before moving to the regular pediatric ward. We felt again like the parents of an infant taking such joy in the movement of an arm or leg, opening his eyes, showing his unhappiness when his sister entered the room, etc. He suffered some terrible headaches for about a week. He began doing rehab in his room a week after arriving at the hospital and by the weekend, he was up and walking. At this point, I was told that we would be in Sioux Falls for 3-4 weeks with the rehab. Jason was discharged from McKennan exactly two weeks from the date he arrived and is continuing his rehab in Aberdeen!
He continues to make improvements daily. He has overcome most of the difficulty with his right side limbs. He does continue with physical therapy once a week. Jason ended the school year as Student of the Month for his third grade class and was able to pass on to the fourth grade.
Because of the location of this AVM, the doctors have chosen to have Jason go through the "gamma knife" at the Mayo Clinic. Jason is scheduled to meet with Dr. Pollock on July 6 and get an angiogram, an MRI and radiosurgery on July 8.
Update 1 Sep 98
We took Jason to Mayo on July 6. He spent two days having tests, and received the radiosurgery on the morning of July 8. Jason received three 17 minute doses of radiation. Dr. Pollock's prognosis is excellent. He feels there is a very good chance the AVM will be gone within 6 months to a year. Jason will return to Mayo next summer for and MRI. Hopefully that will show evidence of the AVM shrinking. He will then return to Mayo in 2 years for an angiogram, and God willing this will show that it is completely gone.
The doctors have said that Jason can begin with normal activities for a ten year old boy, with a few exceptions. They would like for him to not over-exert. He is allowed to run and play, ride his bike, etc. He isn't allowed to participate in extra-curricular sports such as soccer, football, wrestling.
We wake every day, say a prayer that his day is uneventful and look forward to the time the doctors say it is gone. Until that time, we, as parents, worry. But we also feel blessed that he has come through this ordeal so well. It is certainly not a path any of us would have chosen, but we do feel stronger in our family and our faith because of it. God Bless.
Update 24 Jul 2001
On July 23rd, we traveled to Sioux Falls, SD for the much anticipated cerebral angiogram that would hopefully put an end to this nightmare. For three long years we have hoped and prayed that there would be a time that we no longer had to fear the AVM.
I'm ecstatic to share the news that the angiogram showed that the AVM is completely gone! Our prayers have been answered and we continue to believe in miracles.
Author no longer active 3/14/2011