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, August 13, 2010

Going Home

Tina took it very easy yesterday - lots of naps. We were surprised last night when the neurosurgeon informed us that we were clear to go home anytime. He even said if we wanted to go home last night we could, but given the fact that she still had a PIC line in her arm and it was 6:00pm and we wouldn't get home until well after mid-night, we decided to take it slow and wait until today to go home.

We're taking it very slow again this morning. Tina had her PIC line taken out earlier this morning, and she also needed a haircut. When she went into her last surgery her hair had grown so much that they needed to shave her head again, but rather than shaving her head they simply shaved around where her incision was. The part of her hair that wasn't shaved was about an inch long so, as you can imagine, it made for a pretty rough look. I told the neurosurgeon to stick to surgery because barbering was not his cup of tea. To which he said, "well if after four brain surgeries the worst thing that comes out of it is a bad hair cut, I'd say you're doing pretty good." I guess I'll give him that one. At any rate we just ended up shaved the rest of her hair off this morning.

The neurosurgeon's nurse came in this morning and gave us Tina's discharge orders and the epileptologist also stopped in to say good bye. The good news is that we're going to be able to do Tina's surgical followup with a neurosurgeon in Grand Rapids, and the epileptologist has also agreed to do Tina's neurology followup himself when he makes his visits to St. Mary's in Grand Rapids. Interestingly enough the neurosurgeon that will do Tina's followup in GR is the epileptologist's son who studied with Dr. Miller (the neurosurgeon who did all of Tina's surgeries) and Dr. Miller feels very comfortable turning Tina over to him.

As of right now we're clear to leave any time, but as much as we would love to bust out of hear right now we've decided to take it slow. Tina is feeling very tired this morning and so she's going to take a good long nap and eat lunch here at the hospital then we'll probably hit the road mid-afternoon.

Please continue to pray for Tina as she is very tired. After four surgeries, which means four times under general anesthetic in four weeks, Tina is pretty wiped out. Sitting in bed for four weeks with very little movement has also made her quite weak. Walking into the bathroom this morning, Tina got very dizzy and needed to get back into bed. Please also pray for her continued healing as there is still risk of infection and other complications over the next month or so. It's going to take a while for Tina to get back to a normal activity level which might be difficult for our kids to understand. Tina's mom is going to come and stay with us next week since I need to get back to work while I still have a job, so hopefully she can help out with the kids so Tina can continue to rest and heal.

It's hard to believe that we are near the end of this phase of our journey. Although we are going home without the solution that we were hoping for we don't feel like it has been a waste. God has used this time to deepen our marriage, deepen our relationship with him, and to shine truth to those that have cared for us here. Although we may never fully understand this untraceable path that we are on, we can see some of the amazing ways that God has done some very positive things.

As we head home we recognize that our journey is not over. As much as ever we remain on that untraceable path. We would not have chosen this path, we don't understand all of God's purposes in it, nor do we know why he wouldn't allow for Tina to have a surgery that would treat her seizures, yet we do know that God has proven that he is good, that he is loving, and that he is sufficient for us. His paths may be untraceable but we know that wherever it leads it is exactly where we need to be.

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

It is our great desire that through this experience we have brought glory to God. My hope is that you have seen God's glory through this blog and that your focus has been turned toward him, not Matt and Tina.

I will likely continue to post updates to this blog that may or may not pertain specifically to Tina and her health, but I did want to thank everyone who has followed our journey over the past month and offered their thoughts, prayers, encouragement, and wisdom - it has helped us immensely while we have been isolated here in Cleveland. Words cannot express our gratitude for you.

5 comments:

Anonymous said...

Matt and Tina,

Great to hear that your heading home! Will be praying that the trip home goes well. Thanks for sharing and helping us to walk our "untraceable paths"

Remember if you need to stretch your legs you can stop in Dundee* . Your about half way home.

Jim T

* Home of Cabella's

Anonymous said...

How we love you!! I will be praying for a good trip home.
love, mom L.

Anonymous said...

We're so glad that you are going home. Tina, take it real easy and heal quickly. Matt, we know you must be tired too. Even though you have to go back to work, try to get some rest. We will have you guys and your family in our thoughts and prayers. We love you!

G-Dude and Kathy

Anonymous said...

I wanted to stop at Cabela's :) But the wisdom of my husband prevailed. We did stop in Brighton for a great dinner at TGIF. Sure beats 5 weeks of hospital food! :)

-Tina

Wyma Family said...

So glad you are heading home, thanks for sharing this journey with us, you are incredible people, we will continue to pray

much love
the wyma family