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, August 12, 2010

Home Away From Home: The EMU

Three hours after Tina went into recovery I still hadn't heard anything else so I asked to be allowed to go back and see Tina which they did. Tina was tired but she looked good and was awake and alert. I asked the nurse why she was being held in recovery so long and he said it was because they were waiting for her room to open up. I asked him where they were moving her to and he said the Neuro Step-down Unit. When I asked about the EMU he said that normally they don't put patients back in the EMU after they remove their implants. I told him that normally patients don't spend 4 weeks in the EMU to begin with and that the EMU was expecting her back and that the neurosurgeon had told me that he had requested that Tina be put back in the EMU. The nurse said that this wasn't what the surgeon had ordered on paper. Ultimately I convinced him to call the surgeon which he did and in the end Tina was taken back to the EMU.

We were so happy to be able to come back to the EMU and they were happy to have us back. They had done nothing to her room from the time Tina left for surgery. They simply shut the door and put a "caution wet floor" sign in front of it, so there was no way someone else could move into it. However, that meant when Tina showed back up after surgery her bed hadn't been made up. So everyone pitched in. Even the EEG tech came in and helped make her bed and transfer her into bed and all the rest (totally out of the EEG tech's job description). I told her that she would make a great nurse but she said that she wouldn't do "nurse" work for just anyone.

Tina slept well last night and yesterday is one big blur for her. Today she's doing very well, tired, but good. She loves not having wires coming out of her head and being able to move around unhindered. The swelling is down considerably and we're hopeful that the doctor will let her go home soon.

Pray for our kids as they are struggling with wanting to go to our annual family camp without us. They keep trying to pin us down to an exact day that we're going to be home because they want to be there when we get home. They love our family camp and it would be a shame for them to miss it (which really isn't an option).

We are so excited to be headed home and can't wait to do simple things like mow the lawn, eat at our own table, and sleep in our own bed. After sleeping in a separate bed for more than four weeks, it will be so good to sleep next to my beautiful wife again. however, we will need to take things easy. After four weeks of laying in bed, it's going to take Tina some time to regain her strength so it may be a while before she's able to do everything she wants to do. The other difficulty will be that since she had a generalized (grand mal) seizures while here, she will not be able to drive for at least six months. We've been here before and with the help of friends and family we're able to manage through, but it does add some additional complications to life.

Many of you have asked about bringing us a meal when we get home. If you're interested in doing something like that you can get a hold of Katrina De Man at: 616-874-7124 or katfood16"at"yahoo.com and you can coordinate with her. Thanks you in advance for helping out in this way.
Posted by at

5 comments:

Anonymous said...

So happy that Tina is doing well. We will definitely miss you at Camp Calvary and will love extra hard on the kids. They will be having a great time I know:o) We will continue to pray as you begin the second part of this journey, as I know the first few weeks will be hard. Love you lots

August 12, 2010 at 3:54 PM
Aunt Marcia said...

that comment was actually from me!!!

August 12, 2010 at 3:56 PM
linusvpelt said...

So glad you will be coming home. The kids seem to be doing great and Uncle Mike already admonished them to pitch in and be helpful :). Your message along with Katrina's email address kind of make it sound like you want people to furnish catfood for meals. I know that is just silly but you need to be careful - most everyone knows that Tina has a bent towards dogfood. heheheh just ask her. Love you sis - tender time is over back to pick-as-usual.

August 12, 2010 at 5:23 PM
Mike said...

Hey guys,
Hope recovery goes quickly and smoothly. You might want to obscure that email address a little (such as by using the word "at" and separating it a little) to keep the spambots from flooding your friend's inbox.
So glad to have followed along on this journey, you have both been very inspirational to so many people. God bless you both.
-Strovens

August 12, 2010 at 11:26 PM
Anonymous said...

We are so glad that your time at CC is almost over. There is NO PLACE LIKE HOME! God bless you as you recover, Tina! You, too, Matt!
Love you.
Cronk

August 13, 2010 at 8:55 AM

Post a Comment

Subscribe to: Post Comments (Atom)