Early Easter morning, four and a half years ago, life for our family changed forever. I awoke to the sound of an otherworldly noise and Tina’s body convulsing uncontrollably. That event began us onto a path where we would discover that Tina was suffering from late onset Epilepsy. That path would include long periods of Tina being home-bound and a non-stop roller-coaster of trying to figure out which medications would strike the best balance between controlling her seizures but also limit the debilitating side-effects of chronic fatigue and loss of focus – that effort has only been marginally successful.

On July 14th 2010, our path took another turn when Tina underwent a five week long surgical procedure where doctors at University Hospitals in Cleveland Ohio implanted multiple electrodes into her brain in the hope that this would allow them to locate the spot in her brain that is responsible for her seizures and then surgically remove that spot in an attempt to control her seizures without medication. Unfortunately after 3 surgical attempts to locating this seizure focus, the clock ran out and the risk of continuing this procedure became too great, so they removed all of the electrodes, and sent her home with very little to show for our 5 weeks in the hospital.

When we left Cleveland two summers ago we couldn't imagine that we would go back anytime soon. Those five weeks in the hospital were very disappointing for Tina and difficult for our kids. However, over the course of the last year and a half, Tina's seizures have become progressively more frequent, and medications have become progressively less effective at controlling her seizures. So, after consulting with Tina's neurologists, it is clear that we are in for yet another turn in the path of life.

We will once again be making the trip to University Hospitals in Cleveland, and on Wednesday January 11th, Tina will once again undergo the same procedure to implant electrodes in her brain to monitor seizure activity in the hope that they can determine the physical location of her seizures and surgically remove it.

This is not a path that we went looking for nor did we anticipate how sharply our lives would change literally over night when four and a half years ago these seizures began. There have been days when we have wondered as to why these things were happening and what God was up to in this. What we have learned is best summed up by the Apostle Paul in his letter to the church at Rome where he said that the paths that God lays out for us are "beyond tracing out." We may not understand this path or where it’s leading us, but what we do know is that we would rather follow God’s untraceable path than to follow any path we could lay out for ourselves. This blog is our attempt to bring others along with us as we walk along God’s untraceable path.

Friday, July 30, 2010

Pray for Seizures

They decided to try another round of "mapping" this morning and didn't get much further than yesterday. They started stimulating electrodes from a completely different part of her brain and didn't get much further than they did yesterday before she went into a grand mal seizure. This time she had no warning at all - they just flipped the switch and she immediately went into a grand mal seizure. Apparently her brain doesn't like to be electrocuted.

We haven't really heard much about the seizure she had today while they were mapping but apparently the seizure she had yesterday during the mapping really didn't help much as far as moving us any closer to the final surgery. Seizures that are "artificially" triggered through electrical stimulation really doesn't help confirm her seizure location. Unfortunately when Tina is off from her meds her brain is way too on the edge in order to do further mapping. She's so close to seizing now that they fear that off her meds, further mapping will just continue to cause Tina to have grand mal seizures. Unfortunately she can't get back on her meds until she'd had more "regular" seizures.

The reason that they're trying to do the mapping before she's back on her meds is to try and manage time and balance risk. The mapping process can take a couple of days to do and so if they have to wait until she's back on her meds to do the mapping, and if they have to wait for her to have seizures to put her back on her meds, the time could begin to add up again. The risk is that the longer she goes with these electrodes buried in her brain the more opportunity she has for developing an infection - a complication that we don't need.

So we would ask once again that you would bring Tina before God in prayer. Please pray that she would have several good seizures that continue to point in a positive direction, that she could get back on her meds, and that they can get the mapping done so that she get back into the OR get her electrodes out and cut out her brain.
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3 comments:

Kathryn Jones said...

Interesting timing, I am about to park my kids in front of a video and have my quiet time. I will pray for seizures and good data, and everything else you need.

Love you guys!

Kathryn

July 30, 2010 at 12:33 PM
The Boes Family said...

Interesting request.... I am to pray for my friend to have seizures so that they can cut out her brain. We live in a twisted world.

I am praying for good data, via seizures, and peace in the journey

July 30, 2010 at 5:18 PM
Anonymous said...

Lifting you both up in prayer(and your kids). Praying for endurance as you walk this "untracable path"

Jim T and family

July 30, 2010 at 6:42 PM

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