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.

Thursday, July 29, 2010

Interesting Morning

As you may have gathered from Tina's comment on the blog yesterday, after she "warmed up"... she "cooled down" and didn't have any seizures. Her folks headed out in the early evening and Tina and I just hung out in her room killing time until we went to bed. Tina wasn't feeling all that sleepy and the nurses had to change her IV (not a pleasant experience - Tina has had so many IVs in her arms that they just look like one big bruise) so she stayed up until they were done getting it in, but when she tried to fall asleep her stomach wasn't feeling very well and her mind was racing and she just didn't sleep well.

The neurologist told us yesterday that he wanted to do some "mapping" of Tina's electrodes today so when her nurse came in this morning at 8:00 I asked her what time she thought they would start this mapping. She asked the EEG tech who said around 8:30. So we got up a bit earlier than we normally would have, especially after Tina's poor night's sleep. I ducked into the bathroom to get cleaned up before the neurologist showed up, but when I came out he was already there and getting ready to start the mapping.

Mapping is the process in which they go in and stimulate Tina's electrodes one at a time with a fairly high voltage and observe what kind of effect it might have on her. The idea is that they want to clinically verify what the part of the brain under each electrode is responsible for so that when they finally remove the part of her brain that is causing the seizures they have a good idea what else they might be effecting. So they stimulate the electrodes one at a time and then ask Tina if she feels anything or if they can observe any changes. For instance she might start to feel a bit warm, her fingers might start to tingle a bit, or her lip might quiver. They might have her read out loud and see if her speech starts to slur and so on.

So we had a whirlwind morning of it before they plugged Tina into the 480 (not really) to see what would happen. So it was that, as I was still folding my cot up this morning, they flipped the switch on the very first of the electrodes on the surface of her brain. I had asked the neurologist what Tina should expect to feel when they were doing this, and he said that they really were still in the process of setting up and that the first few electrodes that they stimulated should have no effect whatsoever. However, immediately after they flipped the very first switch, Tina sat straight up in bed and said, "that did something. Where's my button - I'm having deja vu." within 5 seconds she was having a grand mal seizure.

It was a rather strong seizure this time, but she eventually came out of it without needing Ativan. As is typical, Tina was unconscious for a half hour or so and then slept for most of the rest of the morning. The neurologist was going to review the data they collected from this seizure and try to analyze what happened. As of now we're not sure what bearing this seizure may or may not have on Tina's impending surgery. I'll post more when we know more.

Tina's folks have come back to the hospital and we're all hanging out now watching TV... well actually they're watching TV and I'm writing on the blog. The neurologist mentioned before he left that they may consider coming back later today and continue with the mapping. Given our recent experience with the whole mapping process we're not real excited about this, but hopefully he was able to learn something and can make the necessary adjustments to make it a bit less... well... exciting.

5 comments:

Woman With Windows said...

I woke up this morning with a more than usual pressing from the Holy Spirit-- three people immediately on my heart. Tina & you were two of the three. I've spent the morning talking to our Father -- praying as I go. I'm continuing to keep Tina at Jesus' Feet and praying you feel His Presence in an undeniable way.

Love you all!
Jodie

Shelly Poling said...

I will continue to pray and pray that you get the answers that you need today.. Love Shelly

Anonymous said...

Thanks for you prayers! Still a quiet day and evening! But I feel great. No pain! Just trying to conjure up some excitement.

Dana Linderer said...

Wow, an "interesting morning" you have had indeed. You continue to be in our prayers.
Love,
The Las Vegas Linderers

Daniel & Hope said...

Keep your head up Tina and your eyes on our Lord, you are doing so well!!! We continue to keep up with this blog and your folks email updates. So thankful they could be with you for several days! Our continued prayers are with you all.

Love
Dan & Hope