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, January 11, 2012

Resting... Sort Of

It's been a long day so far, and it isn't over yet.  Sorry that I went so long getting a follow up post out this afternoon.  The surgery took a lot longer than I remember it taking last time and I didn't want to freak everyone out by saying they were still going.  Sorry if I made some of you nervous.

Tina is now in the EMU and plugged in.  Basically what happened in surgery was that they removed a section of her skull (called a bone flap) and put it in the freezer.  (They put her name and date on it so that when the weekend cleaning crew comes in it doesn't get thrown out with Frank's left over pizza that's been sitting in there for weeks.)  With her skull off, they placed a grid of electrodes right on the surface of her brain.  It's a rectangular piece of plastic with a grid of small metal dots every 1/8 inch or so and each dot is connected to a wire lead.  Once the grid is secured to her brain they feed the wires out of her head and then sew her scalp back up over the wires.  That's pretty much the surgery in a nut shell.

Now that she's in the EMU they hook each of those wire leads up to a computer that can monitor the brain activity coming from the area immediately surrounding the metal dot that it's connected to.  This way the hope is that when she has a seizure they're able to see which metal dot shows the first sign of seizure.  If they are able to determine that her seizures always begin in the same location, the thinking is that they will remove that part of her brain and - presto- no more seizures.  So as odd as this sounds, we need Tina to have seizures in order for them to be able to remove the correct part of her brain, so please pray that she would have seizures... starting tomorrow.

As of right now they still have her on her anti-seizure meds through tomorrow.  They're not sure if they will take her off her meds tomorrow morning or tomorrow night, but this is the same routine from the last time we were here.  They would rather she not have a seizure immediately after surgery if possible.  However, she is hooked up to the computers so if she does have a seizure they should be able to capture it, and since she's on her meds it shouldn't progress into a grand mal, which is always a good thing.

Tina came out of surgery pretty tired as you can imagine, so she's trying to rest but, as anyone who has ever had surgery knows, that's easier said than done.  She has every monitor conceivable hooked up and they're always beeping, inflating, deflating, or printing something, not to mention the doctors and nurses coming in every 15 minutes or so to check on her.  She also says that her head hurts more this time than she remembered it hurting last time.  After they gave her drugs the pain went down considerably, but now she's feeling a bit nauseated.  The bottom line is she's trying to rest but not having a ton of luck.

We received a warm welcome into the EMU.  We haven't seen anyone we don't know, and I got my fair share of hugs when I walked in this afternoon just before they wheeled Tina in.  It is so nice having familiar faces here, and not only that but to have those familiar faces know us personally is so reassuring.  In some ways it feels like we never left.  Seriously - I took a trip down to the cafeteria about 7:00 and grabbed my diner (and lunch) and brought it back up to the room to eat as I've done a million times, and it felt like I just did this yesterday.  Everything from the elevator ride, to walking down the hall with food in my hand, to sitting in the room trying to eat as quietly as I can - it was an odd experience. 

It's 8:00 and Tina appears to be sleeping, but that probably won't last.  The nursing shift change just happened which means a new set of nurses will be coming in to do their checks(and I imagine a few will be stopping in just to say "hi").  The first night after surgery is always a bit more chaotic than the others, at least that was the case with the last four.  It's hard to believe that my wife has had 5 brain surgeries, but hopefully she'll only got one more on the way and that's it.  Six is plenty enough to last a lifetime.

5 comments:

Anonymous said...

Thanks for the updates Matt. We are praying for you regularly and looking forward to what God will do. "Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."

Anonymous said...

how we love you both!!! Dad and mom L.

Dave and Kathy Boes said...

Just a quick check on Tina before I go to bed. Praying for both of you. You are one brave woman, Tina Mead. Love you!

Kathy

Carl D said...

You do sound like an engineer who loves his wife.

Carl D said...

You do sound like an engineer who loves his wife.