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.

Wednesday, July 28, 2010

She's "Warming Up"

After what we think was a false alarm last night it has been a fairly quiet day. Tina got up to go to the bathroom (which doesn't mean she actually got to go to the bathroom, more like sit on a 5 gallon bucket with rails next to her bed) and after having laid in bed for 36 hours with a catheter, pain meds in her system, and not a whole lot to eat, she passed out when she went to stand up after using said 5 gallon bucket. At first the nurse thought that she was seizing, but after the fact the EEG tech didn't seam to think that the EEG showed that it was a seizure so likely she just passed out. The neurologist will take a look at it and see what they think.

Tina is doing much better this morning. Her pain is down considerably and hasn't needed any medication. She has successfully used the bedside commode (the proper name for the 5 gallon bucket) without incident which we all appreciate. She doesn't have much of an appetite so I've been forcing her to eat something. Tina's parents came in last night and spent a few hours here before going to a hotel for the night. They came back late this morning and left to go down to the cafeteria a few minutes ago.

About 20 minutes ago, when Tina needed to go to the bathroom, the nurse came in and said that she needed to be careful because the EEG showed that she was starting to "warm up." Aside from thinking that all Tina does is go to the bathroom, "warm up" means that they're starting to see some seizure type activity on her EEG but that it hasn't evolved into an actual seizure yet.

Please pray that Tina would begin having seizures, that they would be of a nature that the neurologist can discern something from it, that Tina would be safe in the process, and that we can being to move toward some kind of positive conclusion to this Cleveland vacation.
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6 comments:

Anonymous said...

Tina here- 7:15pm. Just watching the Wheel and winning a lot of imaginary money.....we already have a trip to Hawaii when we get out of here :). Anyways, no seizures today! So far.

July 28, 2010 at 7:18 PM
Jim and Chris said...

We are contining to pray for those seizures to come quickly, safely, and in a very obvious location. You can do it, Tina! "I can do all things through Christ who strengthens me." Phil. 4:13.

Love and prayers, Jim and Chris

July 28, 2010 at 8:59 PM
Becky U said...

Continuing to pray.....

July 28, 2010 at 10:10 PM
Shelly Poling said...

I am praying for you. Love ya Shelly

July 29, 2010 at 7:47 AM
Anonymous said...

Hey Tina, I hope I am included in the Hawaii trip you won! LOL! The pool is in good shape and ready for us to be floating in it when you are able:) I got some beautiful cucumber from your garden last night with the help of ALL the kids! My girls miss you too, they were asking last night when you were going to be home??
Praying for you as always...I miss ya tons!
Hugs,

~Erin

July 29, 2010 at 9:02 AM
Anonymous said...

Matt and Tina,

Praying for you and your family. Praying that your "vacation" will end sometime soon.

Step 1 seizure (with good data)
Step 2 surgery
Step 3 Recovery and your out of there!

Jim T

July 29, 2010 at 11:00 AM

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