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 15, 2010

The Long Wait Starts

Everything went well yesterday. Tina arrived in her room at about 2:00 pretty groggy from the anesthesia. She also had a head ache - go figure. Pretty soon after she arrived they connected the 10 electrodes that are implanted in her brain to the computer and started recording her brain activity. As she became more awake her head started hurting more and they gave her a small dose of Morphine for the pain. She also was getting pretty hungry since she hadn't eaten anything in 24 hours so she ordered a light dinner which she "egressed" shortly after. Poor girl.

About 9:00 they realized that she hadn't gotten her CT scan so they had to disconnect her electrodes and take her back down for her scan. The results came back that all he electrodes were exactly where they needed to be. (Good job Dr. Miller.) They plugged her back in, we watched a couple episodes of Myth Busters and decided that Tina had better get some sleep. In the end she didn't sleep very good, as anyone who has ever been through surgery knows the nurses come in every 15 minutes to check something or ask some question, and when the nurse isn't there some machine starts beeping, a BP cuff starts pumping up, or those stupid leg things turn on.

This morning she was able to keep a breakfast of Cream of Wheat down which is good and I was able to talk the nurse into disconnecting her catheter, BP cuff, O2 wire, and her "leg warmers". With any luck I'll get them to let her put her regular PJs on after she wakes up from her nap.

Now we sit and wait for her brain to have some kind of seizure activity that they can capture which will tell them where they need to operate. It may sound strange that we want her to have seizures but that is what will help the doctors make an accurate decision about the next step. The ideal situation would be that she have a series of simple partial (not grand mal) seizures that clearly show what part of her brain is causing the seizures. What we don't want are grand mal seizures. Unfortunately, Tina's track record is that off her meds her simple partial seizures eventually escalate into grand mal's. The other unfortunate thing is that Tina also tends to not be able to produce seizures on demand. It isn't as simple as going off her meds and bingo seizures. So please pray that God would provide all that is needed in this area as well.

Pray for Tina during this time in the EMU. She can become discouraged just laying in bed, especially when she doesn't have any seizure activity. She gets board and feels like when nothing is happening that she's wasting her time here. Seven days is a long time to be plugged into the wall with a short cord.

We are so grateful for all those who have offered prayers for us, and we have heard from so many of you who are following this blog to keep up to date with what is going on with Tina here in Cleveland, but it is our greatest desire that our time here would not be primarily about Tina and Matt, but that God's glory would be displayed through us. Here comes the sermon:

Paul tells us in Colossians 1 that all things were created by Christ and all things were created for Christ - that includes us. Paul goes on to say that God's purpose in all this is to reconcile to himself all things by making peace through his blood. We hold firm to the fact that we were created by Christ so that we would bring him glory and so that we could enjoy him forever. We also hold firm to the fact that this was made possible only through what Christ did for us on the cross and not through anything we could do to make ourselves acceptable to him. Paul says that God reconciled us to himself not that we reconciled ourselves to God.

So whether we find ourselves stuck in the EMU for 7 days or faced with brain surgery and all the uncertainty that comes with that, we do so with an attitude of gratitude. Jesus made me, for himself and he bought me with his own blood so that I could be with him forever - how could I be anything but grateful.

Oh, the depth of the riches of the wisdom and knowledge of God!
How unsearchable his judgments, and his paths beyond tracing out!
"Who has known the mind of the Lord?
Or who has been his counselor?"
"Who has ever given to God, that God should repay him?"
For from him and through him and to him are all things.
To him be the glory forever! Amen.
- Romans 11:33-36

12 comments:

Becky U said...

Waiting with you in prayer....

Erin said...

Does Tina need the latest and greatest version of Jewel Quest 4 to occupy her time? It would give me an excuse to buy it, and burn a copy for ya!!! Matt, you will have to give up your blogging for a bit while Tina spends countless hours playing:)

Christa said...

we could have sent hours of prison break!!! ;0) you can waist lots of time of facebook!

Anonymous said...

love you! so wonderful to talk to you this am.!!!! praying

Kelli said...

Hey matt....
Just wanted to let you know that Jon and I are praying for you guys. We'll try to keep up with what's going on with the blog and sending hugs for both of you from us
Jon & Kelli

Picketts said...

Continuing to pray - strange to pray for seizures but... it's the end result that matters! Appreciate the way that you share Christ in everything

Luann said...

Hi Matt & Tina--
I'm Kelli Holthe's mom. Kelli and Jon sent us the link to your blog and I just want to let you know that we'll be praying for you guys as you walk through this process. Blessings!

linusvpelt said...

Amen Brother! I have been thinking so much this week about our free will and the choices we all squander that tend to hurt us an others and the heart of the Father, then there is this - no choice no decision just a sickness as a result of a fallen world. You two truly have been an inspiration as you have always yielded control to God and proclaimed His Glory through a very difficult time.

Unknown said...

You're doing good guys, hang in there, this is just a little bump in the long road of life.

Amy said...

Dearest Tina,
It was so good to hear your voice yesterday and Matthew, what powerful "voice" you have in your writings. God is great and he was particularly awesome the day He led me to the two of you!
Praying without ceasing!

Pam Cronk said...

Dear Tina & Matt~
George and I are both watching the blog.
The Lord will get you through this.
We love you and pray for you often.
Pam

Kevin and Laura said...

We're so glad to hear the surgery went well. We are and will continue to pray for God's faithfulness in bringing Tina healing and freedom from seizures. We love you guys!

Laura and Kevin