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.

Saturday, January 14, 2012

Seizure

Today started out as so many other days have started here in the EMU.  We were promptly woken up at 8:00am by a nurse wanting to take vitals on Tina.  We got up, Tina ordered breakfast, and I took a shower.  Tina has been fighting discouragement on and off over the last couple of days, wondering if she's made the right decision to come back down here, but this morning she was determined to have a good day even if she had no seizures.  After breakfast we played a rousing game of Skipbo (I kicked her butt), and then Tina decided that she would get caught up on e-mail and Facebook messages.

Tina hasn't had much of an appetite but has felt light headed on and off again, so she thought that maybe she'd better get something to eat.  She ordered lunch and while we were waiting for that to come up, we decided to Skype with my parents for a few minutes and just check in on things at the home front.

Tina's food arrived while we were talking to my folks and Tina progressively felt more and more light headed, so we got off with my parents and figured that she'd better eat something.  It wasn't a couple minutes later, before she even started eating that she felt a seizure coming on.  I won't go into the details but the seizure did end up progressing into a grand mal.

We are very grateful today that first Tina had a seizure and second that it didn't require any drugs to bring her out of it.  The bad thing about giving her drugs to bring her out of a seizure is that it's pretty much guaranteed that after the drugs she won't have a seizure for at least another 48 hours or longer.

I love to watch the staff work here when Tina goes into a seizure.  The nurse that was on today was one that we grew to appreciate very much the first time we were here are she has as much experience with seizures as anyone on the unit.  It never ceases to amaze me how calm, and relaxed these people are when someone is having a seizure.  Watching a seizure can be such a traumatic thing, but once you get it in your head that people don't die of seizures and that they eventually come out of it, it definitely keeps things in perspective.  There was a nursing student who was assisting today and Tina's was the first seizure she has ever seen.  When it was over she was very freaked out.  Tina is always very tired and wiped out after her seizures, and she's sleeping now.

From here it would be good for Tina to have several more seizures just so that they have multiple sets of data to compare.  That way they can make sure that the seizures are all coming from the same location.  However, Tina's history is one that when she has one seizure they tend to come in rapid succession each one a bit more difficult.  Please pray for strength for Tina, for wisdom so that the doctors can accurately analyze the data, and insight for the nursing staff to accurately discern how best to help Tina through these seizures.

We praise our God and King who rules over all things.  Who is sovereign over seizures and brains and who lovingly provides everything that we stand in need of, and knows better than we do exactly what that might be.

11 comments:

Anonymous said...

praise the Lord. sorry it turned into a grand mal, I know that is hard for you to experience, Matt. Now for enough for them to get the info that they need. praying.

Anonymous said...

We are so thankful for this good news! We will be praying for rest and strength for Tina. Paul and Sally

Anonymous said...

It seems not right to say we're thankful that she had a seizure but we know it's needed. We'll continuing to pray. Thanks for the updates!
Ed & Christy

Anonymous said...

Our family is praying for you and yours.

Dave and Kathy Boes said...

Wow! That's not an ordinary day!

So glad she had a seizure. So very sad that they are so violent. Praying for stength and wisdom all around.

Kathy

Aunt Marcia said...

So excited to hear this good news. It seems wierd to say that, but know this is whats needed to get to the end result. We have been praying all week for this to happen. Give Tina a hug for us. We love you, Dean and Marcia

Anonymous said...

So excited to hear this news, and that she didn't need Adavan(sp? ) this time to bring her out of it! We're praying for you guys constantly that God would keep giving you both strength to endure more. Also thankful for all the staff that seems to be making you guys so comfortable while in this situation. ~ Sarah

Anonymous said...

Praise God for the seizure and now we pray for what must be done to
to finish this step in the journey. Aunt Barb

jen said...

well said. thank you for your honesty and encouragement through your writing.

Becky U said...

Praise God! Will continue to pray for you... more seizures, accurate data and strength in all this. You are on my heart/in my prayers often!

Anonymous said...

Glad to hear Tina had a seizure today, but sorry it turned into a grand mal. Hopefully the doctors will be able to be able pinpoint the location now. Praying that God will give you both the strength you need.
Kari Leep