March2003

         .....It's so nice to be home!!!   Home seems much safer right now...My oldest son and I have just spent a week in down town Seattle...at the Swedish NeuroSicence Institute................. the demonstrations for Peace.........blocked the streets for two hours. I watched from his hospital window, while the news came across the tv screen....Our Contry is at War.

        ..... My son, Steve spent 3/4 of his time there restricted to bed........as his seizure medications were taken away ...............so the brain mapping could began again...

        .......Steve, who is 25 now, has had a change in his seizures over the past 1 1/2 years...he experiences severe pain............."chest pain" ..he describes it .as though he is being hit in the chest with a sludge hammer... the headaches..the sharp head pain & eye pain...is so intense at times of seizures that he is unable to function for hours. At home we keep the lights dim and have changed the lighting in the living room to soft pink blubs. As the light can bring on sharp head and eye pain...even without visual seizure activity. At times he runs a temp. up to 103. with a seizure. All of this very rare with seizure activity,we are told.

   Into day two, my son said, "mom," "I'm going to need some medication'"..I thought at first he was talking about pain medication for the head/eye pain...as I watched his body shake .......(this time due to the pain he was experiencing)...."I need to have the doctor put me back on my seizure medication he said.."Mom"..."I don't hink I can take much more of this pain.." The piercing pain was coming from the back of his head ...straight through inot his left eye... his temp had reached 102.4........all I could do was put on the nurse call light.......and ask God to take the pain away..

.......When his doctor came in shortly after that, he said.. .."I see how debilitating these seizures are for you ,Steve"........"We have enough information for now".."we need to load you up on your seizures meds." Before leaving the room he order ..Atavin...IV..........(I thanked God,...........as I sat there thinking ...........how much more must this young man go through) within 10 minutes he started to appear more comfortable as the medication eased the pain and he fell into a sleep that he so desperately needed................(after 2 days of ongoing seizures that continued to worsen as time went on.)

.........By the next morning........Steve was sitting up...painfree..when the Doctor came for his rounds...no pain..no fever...no seizures........
         The plan was for surgery the following morning..........to have the Vagus Nerve Stimulator implanted..........(it is like a pace maker for the brain)....A candy bar stopped this from happening...but, as the Neurosurgeon said, " Steve..........it wasn't ment to be at this time".... With tears in his eyes...he answered her question.."What are you feeling right now"...his reply,....."I have been living like this for so long..I was hoping"...............tears got in the way of speech.......as the exhaustion of it all set in...

      The good news came when she looked over the most recent MRI that was done the day before....There appeares to be new scar tissue showing on the left side of Steves Brain ..in the very back..this has never showed up on any of the other MRIs and It is not the area where his brain surgery was done at 16.   Either it has been missed all these years or ...the more likely...it is damage that has happend from seizures after the first surgery. The reason I say good news is, we may have found the reason for the change in seizures. And this area, we were told is an area where they have good result after removal of scar tissue there. More testing will need to be done...the other MRI 's that were sent there with his records were ruined... The Surgen said, it would be really helpful if she could see a MRI that was taken before the first brain surgery.... I couldn't believe my ears...As I thought about the MRI that I had tucked away back in 1988 ...this one was before his surgery. .......usually, I return them to the Doctors office. I remember thinking at the time when I stored it..."just in case we may need it..in years to come."

     ........I would send it off as soon as I got home, I told her. Upon arriving home, Steve would need to be seen by a cardioloigst...to rule out any heart problems .......prior to another brain surgery....(he did not have any chest pain while hospitalized this time)... He goes in for a Stress test and Cardiology testing next month...and after the results of all the testing....within the next few months he will know if Brain Surgery will be needed for the second time....

         ......All he knows is he has to keep going forward....his quality of life is so affected by his seizures.....he's tired at times...and at times ..he's ready to go home....(Heaven)..what keeps him here is his children and his family ......what gives him the strength he has..is the God above he believes has reasons for everything that happens in his life.
        Hope is continually alive with in my son.......and he's is making it ............One moment at aTime. .............One Day at a Time....
        I will continue my son's journey on the page, Epilepsy.... as I continue down my RoadOfRecovery...making it One moment at a Time....One hour at a Time...........Somedays...It seems I have to start all over...never losing the ground I have gained though....Only by the Grace of God go I......One Day at a Time...