Home

It was a week ago today that we packed up our room in Cleveland, said good bye to our new found friends in the EMU and headed home. For Tina it was the first time and for me only the second time in 5 weeks that we felt the direct rays of the sun and breathed fresh air. We didn’t get more than a couple of blocks down the street before we ducked into a Burger King…

We took our time driving home. Tina wanted to stop at Cabella’s in Dundee but I talked her out of it – after laying in bed for 5 weeks she had a hard enough time just getting to the car let alone walk around the gigantic Cabella’s store. Now I know that most of you probably don’t believe that it actually happened this way (Tina wanting to go to Cabella’s and me talking her out of it) but I assure you it is true – my wife is definitely unique, which is part of why I love her. We did end up stopping at TGI Friday’s in Brighton for a New York Strip that tasted absolutely unbelievable. After 5 weeks of eating nothing but hospital food I can’t even describe how great it was to eat a medium rare steak.

By the time we got home we were both pretty exhausted. The inactivity had definitely taken its toll on Tina’s body. She struggled to step up into the house and just walking around the house wiped her out. That first night home was very unsettling for me. Before we left the hospital the nurse went through all of Tina’s care instructions and she warned me about all the things to watch out for – cerebral fluid leaking out of her incision, bleeding, infection, neuro-responsiveness, falls, cleaning, etc. – all of these thing were constantly at the forefront of my mind.

Going to bed last Friday night was the beginning of one of the most fitful nights of sleep I’ve had in a long time. When we were in the hospital there was a certain sense of security that I took in knowing that even when I was asleep there was someone in the other room watching Tina on the video monitor and could see exactly what was going on inside of her brain. As odd as it may seem, you get very used to being able to look at a monitor to know what’s going on with someone. But of course, we don’t have any of that at home and so I constantly was waking up wondering how Tina was doing. (It didn’t help either that our bedroom is on the second floor and it was 95 degrees, 98% humidity and our house had been shut up with no AC for more than a month.)

Our kids came home on Sunday afternoon and my mother-in-law came Sunday night to stay with Tina and the kids while I went back to work. It has been great having her there to help out and give me some peace of mind while I was at work. Throughout the week Tina has continually gained more and more strength. She no longer get’s too winded walking around the house and she’s able to go up and down the stairs without fear of falling down them. She still has a fair amount of swelling in her face and she’s still pretty bald, although her hair is growing quite well – besides she’s beautiful bald.

This week has had its ups and downs as our family settles back into normal life. The adrenalin has subsided, the immediate stress is gone, and the normal everyday issues of life are starting to return. (kids fighting, the cat bringing dead mice to the door, complaining, bickering, yelling, crying – kind of like your house.) At the same time we have enjoyed being back together as a family. (watching a movie together, eating together, playing games, wrestling, cuddling, family devotions and nighttime prayers.)

The question I get the most often, now that we’re home, is whether or not we are disappointed and discouraged with the outcome of this adventure we had in Cleveland. Do we feel frustrated that we sat there for five weeks without it resulting in any treatment for Tina’s seizures, and only the hope to go do it again at some point in the future? I would be lying if I said that there wasn’t part of us that is disappointed. We went there for the purpose of treating Tina’s seizures not to take up fulltime residence, so not getting that treatment is disappointing. However, from the very first post I put on this blog we knew that it was a real possibility that we might not find treatment… or worse. I referred to the fact that we were on a journey and it was our desire to follow the path that God had planned out for us as we went on that journey. I also referred to the fact that God had revealed through His word that His paths are beyond tracing out.

Apparently this untraceable path included spending five weeks in Cleveland without finding a treatment for Tina’s seizures. Rest assured that if I were God this is not how it would have turned out. If I were planning my path things would have gone much different – it likely would have gone a direction that each and everyone one of us would have been able to trace out ahead of time. What one of us, if we were designing our own path, wouldn’t have planned for the electrodes to be put in the right location the first time, for Tina to have a bunch of seizures the first day there, have surgery the second day, and be out of the hospital by the third; seizure free, and no adverse affects from the surgery? I would have – but let me just say that, for all of our sakes, it’s a good thing that I’m not God. Why?

Because I have learned that sometimes the “traceable” path is not always the best path. Robert Frost’s “The Road Not Taken” is my favorite poems because it reminds me that sometime the path that is unknown and unsearched often times turns out to the best, although we couldn’t see it at the time.

“The Road Not Taken” by Robert Frost

Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveler, long I stood

And looked down one as far as I could

To where it bent in the undergrowth.

Then took the other, as just as fair,

And having perhaps the better claim,

Because it was grassy and wanted wear;

Though as for that the passing there

Had worn them really about the same.

And both that morning equally lay

In leaves no step had trodden black.

Oh, I kept the first for another day!

Yet knowing how way leads on to way,

I doubted if I should ever come back.

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I--

I took the one less traveled by,

And that has made all the difference.

I cannot see from where I am right now how this untraceable path will turn out to be the best, but I am confident that God’s untraceable paths are, and will lead to, an end that is far better than anything I can possibly imagine. So are we disappointed that our trip to Cleveland didn’t turn out differently? Absolutely. Would I change it if I could? Absolutely not. I believe with all my heart, that someday I will be able to say with Robert Frost that by taking the untraceable path “[it] has made all the difference.”

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.

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.

She's Out: Take Four

Dr. Miller just came out and said that Tina is all done and everything went very well. She's got all the hardware out and the bone is back in. Please pray that they would be able to work it out so that Tina can go back up to the EMU for recovery. Normally they would send her to the Neuro Surgical Unit (NSU) and then to a step down unit after her surgery, but given the fact that she has been given her own PO box in the EMU, everyone is pulling for her to go there for her recovery and then be discharged directly from there. It all depends on bed availability in the EMU but the neurologists, the surgeon, the nurses, and the EEG techs are all trying pull the strings to get her back there.

One of the head nurses told me last week that the best thing to do was to leave all our stuff all over the room when we left for surgery and not come back until Tina was done with surgery. If our stuff is still in the room they can't clean it and if they can't clean it they can't move another patient in, so that's what we did - it's a way to work the system.

As of right now Tina will be in recovery for a couple more hours and then will be moved either to the EMU or the NSU and as soon as she's strong enough and feeling well enough we'll be out of here. For now I'm not speculating on when that might be but we're hopeful that it will be sooner than later.

Thanks for your prayers, and we would ask that you continue to do so in the days and weeks to come as Tina recovers and as we come to grips with the results of this untraceable path we've been walking for the past month.

She's In: Take Four

Four weeks ago today Tina and I came to University Hospitals, Tina had her first surgery, and we started this whole journey of trying to find a treatment for her epilepsy. It seemed somewhat surreal this morning that this is the fourth time we've done this and that Tina and I haven't left this building in a month. It was almost funny that I was greeted my name as I approached the desk at the surgical waiting area this morning.

Tina stayed up until about 3:35am this morning and no, she didn't have any seizures. Truthfully, as the clock ticked by, and even when they started to administer anti-seizure meds in preparation for surgery, Tina felt more a sense of relief than disappointment. The realization that we are finally going to be done with this and going home was very encouraging to her. Unfortunately the nurse came in at 5:15 and said that surgery had called and were on the way. I'm not sure Tina actually fell asleep before she had to wake back up and have all the surface electrodes taken off.

Tina was finally taken into surgery at about 8:30 this morning and they will be pulling all of her electrodes out and putting her skull back in place. They expect the surgery to last about 2 hours at the most. Please pray for her safety and for skill for Dr. Miller.

Early Surgery

As of 9:00pm (Tuesday) there have not been any seizures. Tina is doing her best to exhaust herself and try to trigger something. We got up Sunday morning about 8:00am, stayed up all Sunday night and Monday morning, and then after Tina took a 1 hour nap on Tuesday morning she stayed up the rest of Tuesday and dozed a couple of hours in front of the TV last night. She took about a 1 hour nap this morning and is still going. She is now under doctors orders to stay up until 3:00am tomorrow morning.

Tomorrow they're going to get her up at 4:30am to scrub down for surgery and then will give her anti-seizure meds at 5:00am in preparation for her surgery at 8:00am. The nuro-surgeon came through this afternoon and feels very strongly that Tina needs to get the electrodes out very soon because at this point the risk of bone infection goes up exponentially.

Right now the surgery she is scheduled for is to remove the electrodes from her brain and replace the skull. If she has a seizure before surgery they may postpone it and actually do the surgery were they remove (resect) part of her brain to treat her seizures, but it all depends on her having a seizure yet tonight.

We are feeling very at ease tonight. We are praying for a seizure but feel at peace with the possibility that it may not happen. Please continue to pray for Tina - both that she might still have a seizure tonight but also that her fourth surgery in as many weeks would go smoothly and that she would have a speedy recovery so we can get out of here and get home.

Thanks so much for waking through this process with us by reading this blog and offering your insights, encouragement and your prayers.

Faith?

Sorry that I missed posting anything yesterday. For the most part it was a very uneventful day. Tina's brother and sister-in-law came by the hospital in the morning for a few hours and headed out shortly after noon. Then Tina decided to pull another all-nighter to see if a last ditch sleep deprivation might get some seizures going. I have to admit that last night's sleep deprivation has been the hardest for me of any of the others, but Tina pushed through and is still going strong at 3:30pm (Monday).

This morning we were hit with some tough news that we're still trying to figure out how to deal with. The epileptologist came in this morning and expressed that he's becoming increasingly concerned with how long Tina's electrodes have been in her brain. His concern isn't because of any symptoms Tina is showing or anything like that, but just because of the length of time that she has had foreign objects in/on her brain. So it is his recommendation that they schedule her for surgery on Wednesday (11th) to take the electrodes out, but we won't know for sure until he can consult with the neurosurgeon tomorrow.

The obvious question we had for the epileptologist was what the nature of the surgery would be. He said that unless Tina has some seizures before now and Wednesday, they will simply remove all the electrodes, put her skull back in place, and send her home. As you can imagine this is difficult news. Essentially, unless Tina has a seizure within the next 48 hours, she will go home in the same state that she came to Cleveland in a month ago.

Although we are still praying for a seizure(s) before Wednesday, we had hoped that perhaps they had gotten enough information from all the seizures she had back with the first electrode and could proceed with some kind of resection (cutting out part of her brain) based on that. Apparently, without additional seizures, the risk is just too high to proceed. We are fighting disappointed but Tina continues to amaze me with her ability to holding onto the truth that God is good and is in control in the midst of her disappointment.

We have not given up hope. It is certainly within God's ability to allow for Tina to have seizures that would lead to a resective surgery, and we are praying for that, but I feel a sense of desperation knowing that we're down to the wire.

As I stood in the shower this morning, trying to let the fatigue and disappointment wash down the drain with the water, several thoughts came to mind. I have always struggled with certain passages of scripture that talk about having faith that moves mountains (Matt. 17:20; 21:21), and stories about people who simply have enough faith that God is going to do something and so it happens. I remember a scene from one of those movies that that one church down south made (I think it might have been Facing the Giants), where one of the "spiritual" characters says something like, "who has the greater faith; the farmer who prays for rain and waits, or the farmer who prays for rain and then goes out prepares his field."

I have to admit that I struggle with concepts like this. To me it almost feels as though God moving in my circumstances is contingent upon the amount of my faith that he will. In other words, if God answer my prayers it's because I had enough faith. If only I could somehow believed - really believed - enough, then the "mountain would move." The flip side of that thinking is that if my "mountain" (seizures) doesn't move it's because my faith has failed - I didn't believe enough. This is a concept that I have never been able to get my head around. I just can't make it fit with my theology.

I can't spend the next 48 hours trying to work my mind and heart into a place where if I just believe enough and have enough faith, that God will give Tina a seizure - like somehow my faith that God will do something obligates him to do it. So as I stood there in the shower, trying to wrap my head around all of this, the thought came to mind that perhaps it isn't about how much faith and belief I have in God doing something that I really think he should, but rather it's about how much faith and belief I have in God. Period.

If I believe with every fiber of my being that God is going to give Tina a seizure in the next 48 hours, does that mean that she will have one? I don't think so. It occurred to me that if God gives Tina a seizure based on my faith that he will do it, then the focus become primarily on the circumstances, the event, the seizure, not on where it should be - God. Perhaps faith that moves mountains is faith that is focused not on the mountain but on the one who actually has the power to move it regardless of whether or not he chooses to. If that is the case, then my faith will not falter even if the mountain doesn't move.

There are two farmers who pray for rain. One waits for the rain and the other goes out and prepares his field. Which one has more faith? Clearly the one who prepared his field, right? But what happens when the entire planting season goes by and no rain comes at all and the second farmer goes bankrupt because he invested his money into a field that never produced a crop? Then what? Is his faith shaken? If his faith is based on God giving rain (circumstances) then it will, but if his faith is based on God, period, then even if rain does not come his faith will remain.

The apostle Paul said in Corinthians 13 that "if I have a faith that can move mountains, but have not love, I am nothing." What I take this to mean, relative to my circumstances, is that what is of priority is not whether or not I have enough faith to move the mountain, or bring the rain, or produce seizures, but whether or not my love for God, or my belief in God's love for me, changes if the mountain doesn't move, if the rain doesn't come, or we go home from the hospital no further ahead then when we started this whole thing.

Please, please pray. Pray that Tina will have a seizure. Pray that the surgeon will be able to do a resection. Pray that Tina and I will remain confident in God's love and our (and your) faith would not waiver even if the mountain doesn't move.

"Understanding Will Never Bring You Peace"

Not only is sleep overrated (title of previous post) but so is sleep deprivation. We decided that perhaps "regular" sleep deprivation wasn't quite tough enough so we decided to step it up a notch. We staying up until about 4:30am (Saturday morning) and then went to bed only to have the nurse wake us up at 6:00am (Saturday morning). The thought was that maybe when we just stay awake straight through, our bodies hit a second wind and Tina's not that effected. So we thought that if we stayed up most the night then go to bed just long enough to let our bodies get good and asleep then wake back up, maybe it would get something going. In the end... we just ended up tired.

It was great to have the kids down. My folks brought them by for a few hours on Friday night before heading back to the hotel. Then after our sleep deprivation experiment on Saturday, they came back and we hung out in Tina's room for about 8 hours. We watched movies, played games, and just hung out. For the most part it was a good time, but we could tell that the time away is wearing on the kids. It was pretty difficult for them when it was time to say good bye.

Weekends are very quiet here, and even though our environment doesn't change, there is a subtle shift that just makes Saturdays and Sundays different from the rest of the week. We also decided that one way to know that you've been in the hospital too long is when you start noticing when the nurses get haircuts, when staff go on vacation and when they come back you're still here, and when your physician travels to two different continents in the same time period that you occupied the same 10 square feet. At any rate, after we got up this morning we settled in for another quiet day of reading, writing, TV, movies, and games when in walked Tina's brother and sister-in-law. We had no idea that they were coming down and it was a welcome surprise.

They hung out for a few hours and then went back to their hotel. They plan on stopping back in for a few hours tomorrow morning before heading back home to Grayling (7 hour trip). After they left, we plugged in a movie that they brought with them - it was the first TV we had watched all day, which was a great change.

This morning Tina and I were reading a devotional together that we were given by our good friends and I wanted to share some of what we read. It's a devotional that is written from the perspective of God talking, so when you read the pronoun "I" it's speaking of God.

"Understanding will never bring you peace. That's why I have instructed you to trust Me, not in your understanding. Human beings have a voracious appetite for trying to figure things out, in order to gain a sense of mastery over their lives. But the world presents you with an endless series of problems. As soon as you master one set, another pops up to challenge you. The relief you have anticipated is short-lived. Soon your mind is gearing up again: searching for understanding (mastery), instead of seeking Me (your Master)." - Sarah Young

As Tina and I contemplated this very appropriate devotional this morning, the concept that kept coming out to me was this idea that often I do think that understanding will bring peace, because it's in understanding that I think I can then exercise mastery over my life. If I could just understand why Tina has seizures, or understand why she's not having seizures when she's supposed to, then, armed with this understanding, I could master my life and finally have peace.

But the first line of this devotional just kind of comes up and grabs you by the throat; "Understanding will never bring you peace." Even if I could understand all the whys associated with Tina's seizures, in the end, it would not bring peace. Oh, maybe for a little while there would be a sense of peace, but as Sarah Young said in this devotional, this peace would be very short lived, because this world has no shortage of circumstances that we can't understand (untraceable paths).

This is precisely why God said in Proverbs 3:5-6 "Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight." I may not be able to trace out the path we're on but God promises that if I don't try to take mastery of my life through understanding, but simply give control of my life over to Him, he will make my paths straight.

I think of it like this. When I seek to be the master of my own life I grab the wheel and start moving my life according to how I understand it. I turn left when I think I should. I turn right when I think it's appropriate. I veer to the side when I think something bad might happen to me. However, in the end God tells me that if I will simply give control to him, he will make the road straight so I don't need to turn or veer. I simply need to daily walk in his presence and acknowledge that He's my master, and he promises that as I walk forward every day, my path will never turn. I just walk and walk and walk and I will never end up in the ditch, I will never hit a pot hole, I will never whack a deer.

Now don't get me wrong, I don't take this to mean that nothing bad will ever happen, I simply take it to mean that there will never be anything in my path that I need to cease trusting God and take control in order to avoid. Oh, there may be times when, according to my own understanding, everything in me is screaming to grab that wheel and take over, but I have learned that in the end I am far better off leaving the driving to the one who has made the car, and made the path, and made me, then to think that I could possibly understand well enough to make it on my own.

No. Understanding will not bring peace. Seeking understanding equals a grasp at mastery. Far better to trust my life to the Master - the Prince of Peace.

Sleep is Over Rated

The epileptologist just came through and I've now decided that he is a very evil man. He informed us that he was leaving this afternoon for Grand Rapids. I had to peal Tina off his leg as she begged him to take her with him. (Just kidding.) He goes to GR once a month to consult with the epilepsy program at St. Mary's Hospital - where Tina's neurologist is at - so they'll discuss her case while he's there.

The other thing that he recommended was another night of sleep deprivation. He was just full of good news today. Actually it's not that bad. The kids will be here today and tomorrow and that should help keep us going after a night of no sleep.

Both yesterday and today, Tina has been in very good spirits. It is amazing how God has held her up and encouraged her spirit despite the difficult circumstances. Thanks for praying.

3 Weeks and Counting

As of yesterday we have now been in the hospital for 3 weeks and other than a couple of trips from the EMU to the OR, Tina has occupied the same 15 square feet of space. We continue to wait and pray for a seizure that will move her into the next phase of this crazy adventure we're on.

We are looking forward to our kids coming and visiting today. My parents are going to drive down to Cleveland and spend a couple of nights here so that the kids can come and hang out. We are so looking forward to them being here.

Seeing the Forest From The Trees

We made it about 36 hours total with no sleep - this time I didn't take a nap at all. We decided to thrown in the towel at 10:30 last night, although I think Tina probably could have kept going. As it was she had a hard time falling asleep and didn't sleep well after she did. As of 2:00pm today there is still no sign of seizures.

We did sleep quite late (11:00am) and then listened to Louie's sermon from last week as we ate breakfast. It is so nice to remain connected with the body of Christ in Rockford even while in Cleveland. Louie's sermon was a great reminder to us that our individual stories are simply a part of the much larger story that God is telling throughout all of human history. We are simply trees planted in a much larger forest, and it is the forest that is significant not any particular tree within it.

I have been so humbled by how many people are reading this blog and how God is using it in their lives, but I want to make sure that it is not my tree that is seen but rather the forest that my tree helps make up. It may sound strange that I find it encouraging and comforting to recognize that I am not what is significant, rather that it is what I am a part of that is significant. Far too often I fall into the trap of wanting be the focus of my own life. I want to be significant, but it isn't until I recognize that it is only in being part of God's plan for my life that I find peace and encouragement. Trust me this is not natural for me. I tend to think much too highly of myself and my own significance, but when I am able to see that I have a small role to play in a story that has been going on for thousands of years it encourages my heart.

It is my hope that as you read this blog you would see the forest not the trees.

Stay Awhile...

We're going on 27 hours with no sleep and so far no seizures. The techs thought that maybe her EEG was showing some stuff last night but so far nothing.

The epileptologist just came in and informed us that we're going to continue to wait for more seizures. At this point they feel that the risk is low enough to allow for us to be able to wait for a seizure. On one hand this is good, because it means that our time has not been for naught, but on the other hand it is quite a blow, especially to Tina, to think that we're going to sit here indefinitely waiting for something that she has no control over.

It has been a long and exhausting couple of days, and Tina's emotions are running a bit thin. It is easy to feel like God has left us alone here, and that somehow he's made a mistake, but we have reminded ourselves of the promises he has made to us.

Philippians 1:6 "being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus."

We know that God isn't in the business of starting things into motion and then going off on vacation, forgetting about what he has started. No, we are supremely confident that God has started something good in Tina's life and that he is presently in the process of carrying it on to completion.

So how should we respond? As I pondered this very question over the past hour or so, two things came to mind. First, was what Jesus said when he was asked by a bunch of confused and hurting people how they should respond. "Jesus replied: Love the Lord your God with all your heart and with all your soul and with all your mind. This is the first and greatest commandment. And the second is like it: Love your neighbor as yourself."

The second thing that came to mind was, if I am to respond to this situation with love to God and love to others, how should that look. The Apostle Paul tells me how to love in situations like this in Romans 12. "Love must...be joyful in hope, patient in affliction, faithful in prayer." Wow, that's a tall order.

So it is my desire that I would be joyful in the hope that because God began a good work here that he will be faithful to complete it; that I would be patient in the midst of this affliction trusting to God's perfect timing that he is allowing only the affliction that is necessary in my life to help conform me into his image; and that I would be faithful in prayer as I invite the power of the Holy Spirit into this place and continue to do so even when it doesn't seem to be doing any good.

Please pray with us to these ends.

Sleep Deprivation

No seizures again today, so we once again are going to try the self-induced sleep deprivation. We went to bed about mid-night last night and slept fairly late into the morning in preparation for keeping ourselves up most, if not all, the night and then as late into tomorrow as possible. Who knows if this will help but we're going to give it a shot.

Thanks for your continued prayers.

All's Quiet

After such a difficult day on Friday, yesterday was very quiet. In fact the only thing of any interest that happened yesterday was they ended up removing one of Tina's depth electrodes. Friday night, as Tina and I were staying up trying to see if we could get some seizures going, we decided to play a rousing game of Skip-bo. While we were playing, Tina noticed that one of her depth electrode anchors was loose. The anchor is supposed to be screwed into her skull so that the electrodes don't move. I have to say that it really gave me the heeby-jeebies to see Tina wiggle that thing around knowing that it was buried in her brain.

Neurosurgery came up on Friday morning and took the electrode out... in her room... Yup, they just came in, took her dressing off her head, and pulled the wire out of her brain while she sat in her bed. They gave her a small sedative to help with the stitch they had to put in her scalp. Tina said that the only thing she could feel was the needle stitching her up. This stuff is just plain weird.

We stayed up again until 2:30am last night but still as of 9:00pm Sunday no seizure activity. At this point we're being told that all the doctors are going to confab on Tuesday and decide on the next step if Tina still hasn't had any more seizures. As it stands it sounds like there's basically three things that they could decide. First, they could decide that the risk of leaving the electrodes in Tina's brain has a low enough risk that they will simply wait longer hoping for another seizure. Second, they could decide to proceed with removing part of her brain based on the data that they got with her previous seizure, or they could decide to remove the electrodes and send us home without removing any of her brain.

It has been difficult these past few days as we wait. It has been more than a week since Tina has had any "natural" seizures and so her most recent set of electrodes that were put inside her brain a week ago have yet to record any seizures. There have been those moments when we wonder what God is up to. It seems that we sit here for days without accomplishing anything. This can become discouraging.

This morning as I was reading True Spirituality by Francis Schaeffer I read this; "If we are not careful, even though we say we are biblical Christians and supernaturalists, nevertheless the naturalism of our generation tends to come in upon us...It is perfectly possible for a Christian to be so infiltrated by twentieth-century thinking that he lives most of his life as though the supernatural were not there. Indeed, I would suggest that all of us do this to some extent."

As I read this it reminded me that I don't live in a world that is primarily natural - it is fundamentally supernatural. What I can see and observe around me is not all there is to reality. So where I may not think anything is being accomplished by our sitting here in Cleveland I have to remember that not all that is being accomplished here can be observed. Perhaps what God is accomplishing may not be what we think it is. It is so easy to focus on the natural world in an environment like this, but I have to remember that even the natural world (blood pressure readings, EEGs, video monitoring, seizure meds, etc.) exist to support all that God is accomplishing in the supernatural world.

Please pray that we would continue to walk this path with perseverance and that God's glory would be put on display even in the midst of our disappointment.

No Dice

Well, Tina made it to a little after 3:00am before throwing in the towel - she had a long day. Unfortunately no seizures. We're hopeful that something will transpire sometime this weekend. The neurologist said ideally they would like 2 seizures 6 hours apart. So keep praying with us that this would become reality.

Rough Day

It has been a rough day. I think we both woke up feeling a bit on the edge emotionally. Once again the seizure that was induced this morning doesn't move us any closer to surgery - it doesn't move us any further away, but not any closer either.

Shortly after Tina's seizure this morning her IV quit working. One of the biggest issues Tina has had in this whole thing has been with her IV. She has bad veins to begin with but the antibiotic they've been giving her through her IV tends to break down her veins and causes them to "blow out." After two and a half weeks her arms look like a junkie and it's impossible to find a vein that works. She has yet to get an IV that hasn't required at least 3 tries and the one that quit working this morning required that they stick her nine 9 times before they finally got one to stay. They worked on getting another IV in for about 3 hours this afternoon. They called 3 different people and each tried 3 or 4 times before giving up. In the end they decided to put a central line in directly to a major artery just above her heart. This was not fun for Tina and she is a bit sore from it, but at least she should be done with IVs for the rest of our vacation.

We are definitely getting pretty tired of this whole thing and are ready to be done, so we've decided that we're going to give sleep deprivation another shot tonight. It hasn't been ordered, so the nurses won't run in here and wake her up if she falls asleep, but we're willing to give it a shot and see what happens. Please pray for endurance and that Tina will have a seizure.

For all you Facebook people you can all take shifts chatting with Tina throughout the night/morning to keep her mind occupied.

Pray for Seizures

They decided to try another round of "mapping" this morning and didn't get much further than yesterday. They started stimulating electrodes from a completely different part of her brain and didn't get much further than they did yesterday before she went into a grand mal seizure. This time she had no warning at all - they just flipped the switch and she immediately went into a grand mal seizure. Apparently her brain doesn't like to be electrocuted.

We haven't really heard much about the seizure she had today while they were mapping but apparently the seizure she had yesterday during the mapping really didn't help much as far as moving us any closer to the final surgery. Seizures that are "artificially" triggered through electrical stimulation really doesn't help confirm her seizure location. Unfortunately when Tina is off from her meds her brain is way too on the edge in order to do further mapping. She's so close to seizing now that they fear that off her meds, further mapping will just continue to cause Tina to have grand mal seizures. Unfortunately she can't get back on her meds until she'd had more "regular" seizures.

The reason that they're trying to do the mapping before she's back on her meds is to try and manage time and balance risk. The mapping process can take a couple of days to do and so if they have to wait until she's back on her meds to do the mapping, and if they have to wait for her to have seizures to put her back on her meds, the time could begin to add up again. The risk is that the longer she goes with these electrodes buried in her brain the more opportunity she has for developing an infection - a complication that we don't need.

So we would ask once again that you would bring Tina before God in prayer. Please pray that she would have several good seizures that continue to point in a positive direction, that she could get back on her meds, and that they can get the mapping done so that she get back into the OR get her electrodes out and cut out her brain.

Interesting Morning

As you may have gathered from Tina's comment on the blog yesterday, after she "warmed up"... she "cooled down" and didn't have any seizures. Her folks headed out in the early evening and Tina and I just hung out in her room killing time until we went to bed. Tina wasn't feeling all that sleepy and the nurses had to change her IV (not a pleasant experience - Tina has had so many IVs in her arms that they just look like one big bruise) so she stayed up until they were done getting it in, but when she tried to fall asleep her stomach wasn't feeling very well and her mind was racing and she just didn't sleep well.

The neurologist told us yesterday that he wanted to do some "mapping" of Tina's electrodes today so when her nurse came in this morning at 8:00 I asked her what time she thought they would start this mapping. She asked the EEG tech who said around 8:30. So we got up a bit earlier than we normally would have, especially after Tina's poor night's sleep. I ducked into the bathroom to get cleaned up before the neurologist showed up, but when I came out he was already there and getting ready to start the mapping.

Mapping is the process in which they go in and stimulate Tina's electrodes one at a time with a fairly high voltage and observe what kind of effect it might have on her. The idea is that they want to clinically verify what the part of the brain under each electrode is responsible for so that when they finally remove the part of her brain that is causing the seizures they have a good idea what else they might be effecting. So they stimulate the electrodes one at a time and then ask Tina if she feels anything or if they can observe any changes. For instance she might start to feel a bit warm, her fingers might start to tingle a bit, or her lip might quiver. They might have her read out loud and see if her speech starts to slur and so on.

So we had a whirlwind morning of it before they plugged Tina into the 480 (not really) to see what would happen. So it was that, as I was still folding my cot up this morning, they flipped the switch on the very first of the electrodes on the surface of her brain. I had asked the neurologist what Tina should expect to feel when they were doing this, and he said that they really were still in the process of setting up and that the first few electrodes that they stimulated should have no effect whatsoever. However, immediately after they flipped the very first switch, Tina sat straight up in bed and said, "that did something. Where's my button - I'm having deja vu." within 5 seconds she was having a grand mal seizure.

It was a rather strong seizure this time, but she eventually came out of it without needing Ativan. As is typical, Tina was unconscious for a half hour or so and then slept for most of the rest of the morning. The neurologist was going to review the data they collected from this seizure and try to analyze what happened. As of now we're not sure what bearing this seizure may or may not have on Tina's impending surgery. I'll post more when we know more.

Tina's folks have come back to the hospital and we're all hanging out now watching TV... well actually they're watching TV and I'm writing on the blog. The neurologist mentioned before he left that they may consider coming back later today and continue with the mapping. Given our recent experience with the whole mapping process we're not real excited about this, but hopefully he was able to learn something and can make the necessary adjustments to make it a bit less... well... exciting.

She's "Warming Up"

After what we think was a false alarm last night it has been a fairly quiet day. Tina got up to go to the bathroom (which doesn't mean she actually got to go to the bathroom, more like sit on a 5 gallon bucket with rails next to her bed) and after having laid in bed for 36 hours with a catheter, pain meds in her system, and not a whole lot to eat, she passed out when she went to stand up after using said 5 gallon bucket. At first the nurse thought that she was seizing, but after the fact the EEG tech didn't seam to think that the EEG showed that it was a seizure so likely she just passed out. The neurologist will take a look at it and see what they think.

Tina is doing much better this morning. Her pain is down considerably and hasn't needed any medication. She has successfully used the bedside commode (the proper name for the 5 gallon bucket) without incident which we all appreciate. She doesn't have much of an appetite so I've been forcing her to eat something. Tina's parents came in last night and spent a few hours here before going to a hotel for the night. They came back late this morning and left to go down to the cafeteria a few minutes ago.

About 20 minutes ago, when Tina needed to go to the bathroom, the nurse came in and said that she needed to be careful because the EEG showed that she was starting to "warm up." Aside from thinking that all Tina does is go to the bathroom, "warm up" means that they're starting to see some seizure type activity on her EEG but that it hasn't evolved into an actual seizure yet.

Please pray that Tina would begin having seizures, that they would be of a nature that the neurologist can discern something from it, that Tina would be safe in the process, and that we can being to move toward some kind of positive conclusion to this Cleveland vacation.

The Day After

After almost 10 hours of sleep last night I'm feeling much better. Unfortunately the one that matters didn't sleep so well. Much like the night before surgery the night after surgery is constantly interrupted to make sure that all is well. Fortunately Tina's been able to get a couple of good naps this afternoon.

Tina is in more pain that the previous two surgeries, but I guess that the trade off for not having to remove more of her skull is worth it. (Easy for me to say.) We spoke to the neurologist this morning and once again they are extremely hopeful that Tina will be able to have surgery for her seizures and that the surgery will result in Tina not just reducing her seizures but ending them altogether with no adverse residual effects. However, as before, they cannot proceed with surgery until her brain has produced a series of seizures that show very precisely where her seizure focus is centered in her brain. Once again we would ask for your prayers that Tina would have the seizures necessary to do just that. I am confident that much of the success that we have seen thus far with Tina's seizures are a result of so many faithfully lifting her up in prayer.

We are excited about Tina's parents coming down to Cleveland for a bit. They are due to arrive sometime this afternoon. It will be good to spend time with them and to enjoy their company. I think Tina is getting sick mine being the only familiar face to look at.

Wiped Out

It has been a long day and Tina and I are both pretty wiped out. The day started at 4:00am with a pre-surgical scrub down and this after a very short night with many interruptions. It's amazing that they keep you up later and interrupt your sleep more often the night before surgery than the other nights.

She came back to the room feeling like she was in more pain than after the previous two surgeries but they've been able to manage her pain pretty well since then. She's currently got some morphine going and so she's feeling pretty relaxed. They will give her another dose of anti-seizure meds tonight and then she'll be off from them for the rest of the time here.

I'm going to be heading to bed here shortly and hopefully get get some much needed sleep. I did laundry for 3 hours this afternoon and that just took it right out of me.

She's Out: Take Three

I just heard from the surgeon. Everything went well. Tina is out and in recovery. He didn't end up taking out any more bone, which I think is good, but he did mention that she just might have a bit more of a headache going forward because he had to "slip" the new grid plate underneath the skull and so there may be some added pressure between the skull and the brain that could result in Tina having a headache. He didn't take out all the depth electrodes as he originally thought, so those will stay in until the final surgery when they remove everything and do the resection (remove the part of her brain that is causing the seizures).

Praise God. I don't know if it is simply being tired and worn out or if something else was going on, but I must admit that I was feeling a great deal of anxiety over this particular surgery and I'm not sure why. What I do know is that I once again had to place my wife at the feet of the one who loves her infinitely more than I do and trust him that he know what is best for her. I am so grateful that he once again chose to bring her through this surgery with no complications and that he empowered Dr. Miller with the ability he has to perform the surgery.

I will keep you all posted as to how the day progresses. Thanks again for all your prayers throughout this.

She's In: Take Three

Tina has been taken back now for her third surgery in less than two weeks. She once again proves her amazing resilience by having a better attitude than everyone around her. Some said to me the other day that Tina had better watch out because she just might loose her reputation as a pessimist and be branded as a hopeless optimist. God has certainly been her shield and her strength through this. I'm positive that without the power of the Holy Spirit it would be near unto impossible to maintain the outlook Tina has had, given all the setbacks and difficulties that have been a part of this experience here in Cleveland.

I got my first good look at Tina's head today as they had to unwrap her head and remove all of the surface electrodes before she came down to surgery. She definitely is a zipper head. Her incision curves around the right side of her head from just above her ear, moves toward the back of her head, curves back around and ends just behind the hair line at the center of her right forehead. In all it's probably around 8 - 10 inches long, and you can definitely see where the skull is missing as, rather than a nice curved shape, to the right side of her head it's rather flat. Tina had me take a picture but it probably won't make it onto the blog just yet.

Please pray for Tina now as they perform this surgery and as she recovers that the healing hand of our Loving Father would be felt and that once again His name would be made great. May those around us be truly amazed by all that he does.

Early

We're being told that Tina will likely be the first surgery tomorrow. That means that she will be up by 4:00am to scrub down and then taken to the OR sometime around 6:30am or so. As I've done the previous two times, I'll make a quick post letting everyone know when she's in surgery and when she's out. Thanks in advance for your prayers of protection for my beautiful bride.

Surgery Number Three

As I mentioned in my last post, Tina will need to undergo yet another surgery in preparation for her final surgery that will treat her seizures. The neurosurgeon came through this morning and informed us that he was pushing back a bunch of his other patients tomorrow (Monday) in order to get Tina in.

They will be going in, lengthening her incision, removing some more of her skull and repositioning the electrodes on the surface of her brain. Currently the electrodes are laid out in a square grid that is 8 electrodes by 8 electrodes. The issue is that although the electrode grid is showing Tina's seizure focus very well it shows the focus at its very edge. The concern is that we're talking millimeters of tissue that they would be removing from her brain and so when the seizure focus shows at the very edge of the grid they can't be certain that they're getting the exact right tissue. So they will reposition the grid to center around where the current grid is showing the seizure focus.

We were hoping that they would be able to reposition the electrodes without taking out any more skull but apparently they can't and so this surgery will once again be more painful than the very first one.

As of right now we're not exactly sure what time she will be going back in but the surgeon said that it should only be a couple of hours at the most and then Tina will come back up to the EMU.

Yesterday was a bit of a rough day for Tina as she came to grips with needing to stay here even longer, but toward the end of the day our friends Jim and Chris Courter showed up down here and spent a couple of hours with us. It was a tremendous encouragement to both of us and Tina's spirits were visibly lifted by the time they left. How humbled we are when we realize how much others have sacrificed to support us as we go through this. We often say that prayer is such an easy thing to do, but we all know that if we are truly honest with ourselves the discipline to actually sit down, and take the time to pray for someone can be a difficult thing. So we want to express our gratitude for those who have lifted us up in prayer and continue to do so.

Please pray for our kids, especially Megan, as the news of our extended vacation is not sitting very well with her. She misses her mom.

Good News & Bad News

Today has been a day where we've had good news and we have had not so good news. First the good news.

The neurologist was able to look at the information that he got from Tina's seizures yesterday and his assessment looks very promising. It appears that Tina's seizures are originating from a very focused point in her brain and it also appears as though that point is not responsible for any critical functions in Tina's body. He is virtually convinced that surgery will be able to remove her seizure focus with no ill effects at all. He indicated that the most serious risk would be just the risk associated with the surgery itself not with removing part of her brain.

Now the bad news. In order for them to move forward with the surgery to remove her seizure focus they need to adjust her electrodes again. This will involve another surgery to move the electrodes, another recovery, and another period of waiting and hoping for seizures that give good and accurate data - all before they can do the final surgery. As of now we're not sure when this next surgery to move the electrodes will be. We're hopeful that they can get her in on Monday morning but we won't know for sure until tomorrow.

Although we're encouraged by the long range out look, Tina is very discouraged at the thought of another surgery and an even longer stay here in Cleveland. Yes we are aware that it could be worse. We could have gone through all of this just to be told that they couldn't operate or that there would be significant long term risk if they did do surgery, but I have never found the "it could be worse" argument to be very encouraging. Just because it could be worse or just because others may be worse off than us doesn't diminish the disappointment and discouragement of our situation. Tina is doing well at struggling through, but we would ask once again that you would send forth prayer to our loving and gracious Father to place his hand of comfort upon Tina and that she would experience the comfort that can only come from the one who knows all things and sees all things.

I received an e-mail from a good friend this morning who reminded me that Psalm 145 says in verse 13 that the LORD is loving toward all he has made. I know that my God is indeed mine and Tina's creator and so I hold on to the recognition that he not only made us but according to his word he is also loving toward us, which includes all the events of our lives. Sometimes I can't see how it could possibly be loving for Tina to have to go through another surgery. Why couldn't this be it and why couldn't he just make it so she could just go through with the final surgery? I don't know. What I do know is that the LORD is loving toward all he has made. That's what I know. So somehow, someway, even this "bonus" surgery is God showing his love toward us.

Once again it is God's untraceable path.

...And Another

Tina had another seizure several hours after the last one. It was nearly identical to the one she had earlier today. They did need to administer Ativan in order to bring her out of this one, so she is pretty doped up tonight. I wouldn't be surprised if she ends up with some amnesia from it. The good news is that's three seizures today.

It is mid-night and yes we are still up. For some reason the night shift nurses the last couple nights want to wait until the last minute to change IV locations, give her meds, re-wrap her head, etc. Hopefully they're going to be just about done and Tina can get some sleep. Please continue to pray for Tina as these new type of seizures are more uncomfortable. Please also pray that this nurse standing next to me who 25 minutes ago asked Tina to stay awake for 5 more minutes so she could do something would quit screwing around and leave so Tina can get some sleep.

Another Seizure

Shortly after my last post "Waiting for Seizures" where I asked for everyone to once again pray for seizures, I noticed some seizure type waves on Tina's EEG monitor. (We have an EEG monitor in her room that technically is there for the EEG Tech to see what's going on while in her room, but after four trips to the EMU I must admit that I'm starting to become quite adept at reading EEG. I guess if engineering or ministry don't pan out I could always become an EEG Tech.) At any rate about the time I noticed these seizure waves the nurse came in and started asking Tina some questions to gage her responsiveness. Tina didn't feel anything and was able to answer everything - 20 seconds later the waves disappeared.

About an hour later the nurse came back in again and I could again see the seizure activity on the EEG. Again she didn't feel anything and was completely responsive and able to answer all the questions. No deja vu, no adrenaline rush, no racing heart, just a slight tingle in her fingers. This lasted for several minutes and as the seizure began to propagate further into her brain (multiple waves on the EEG now showed seizure activity instead of just one) she began to show the typical convulsive characteristics of a grand mal.

However this time it was very different from her previous grand mal seizures. It wasn't nearly as involved and as we could see the seizure dissipate on the EEG monitor she didn't fall into unconsciousness as she typically does after a grand mal. Tina's timing was excellent this time, first because she had the seizure before sleep deprivation so now we don't have to do sleep deprivation (thanks babe), and second because the neurologist was on the floor and was able to witness the seizure and assess her during and after the seizure. This was very comforting to me.

As it turns out this seizure was not a generalized (grand mal) seizure as it did not propagate to the entire brain but was a simple partial seizure which is strictly localized to a specific region of her brain. In this way it has the same nature as the simple partial seizures that Tina normally has where she has deja vu, racing heart, adrenaline rush, and is fully aware of all that is going on while she's having the seizure. Unfortunately, none of her usual simple partial seizure symptoms where part of this seizure except for the last one. Tina remained fully conscious and aware of the entire seizure even after she started convulsing. This is the first time that Tina hasn't either just had some strange sensations and returned to normal, or lost all consciousness after she started convulsing and woke up half an hour later unsure what had happened. When it was all over she could account for pretty much every detail throughout the seizure. I feel bad that she remembers this.

Even in the midst of this Tina has not lost her her sense of humor. Because this seizure lasted quite a while they decided to give her a dose of an anti-seizure drug that in the past has induced amnesia. She has whole weeks missing from her memory after she's been given this drug. So as they're getting ready to inject her with this drug Tina said quite matter of factly, "well I guess I won't remember the rest of this hospital say." The neurologist had the nurse hold up and asked her what she meant, so I explained how Tina has responded to this drug in the past. In the end the neurologist just had the nurse give her a quarter dose, which should wear off within 4 - 6 hours.

As is pretty typical here in the EMU, after Tina's seizure everyone and their brother sticks their head in the room to get a look, to which Tina must have decided that she should take full advantage of her audience and started cracking jokes with everyone there. Keep in mind she had stopped seizing less than a minute previous. Honestly I can't remember much of what she said but she had everyone laughing. The neurologist (a sweet lady who can't be more than 40) just shook her head, smiled at Tina and told her that she had such an unbelievable spirit.

I think the 1/4 dose of Ativan has finally hit Tina's blood stream because she's sleeping at the moment. We won't know if this is enough information for them to be able to assess what the next step should be, but the really good news is that, preliminarily, it appears that all of her seizures are starting from the same place which is absolutely necessary for surgery to be a viable treatment. I would guess that the epileptologist will want more data if he can get it, so I would imagine that as the days progress between now and Wednesday they will want Tina to have more seizures. For now we are grateful for what God has provided for today.

I am thoroughly convinced that all that is happening down here is unfolding under the watchful eye of my Creator and is a direct result of the prayerful petitions offered on our behalf by so many of you. Please know that God answers prayer, and please keep praying.

Waiting for Seizures

Tina is doing very well today. She hasn't had any pain meds in over 12 hours and has very little pain. She now has her catheter out and will be getting her "regular" clothes on here shortly. The Neurologist just came through and he didn't order sleep dep for tonight so it looks like Tina gets one more day to recover from surgery before she gets hit with that.

Please pray for seizures. It would be great if she was able to produce a series of "good" seizures without the sleep deprivation, but of course then we'd miss out on all of that great alone time at 3:15am. The doctors and nurses are all very surprised at just how well Tina has recovered from surgery. She is doing better than anyone expected her to, little do they know how many people are appealing to the God of the universe who is able to do all things - including speedy recovery from surgery. We are now trusting this same God to provide seizures.

A Quiet Day

Today has been a better day for Tina. She is still very tired and has been taking pain meds on a regular basis. This evening she is definitely starting to perk up a bit though. She sat in a chair for 3 hours without much pain, which the nurses are simply amazed at. Her face is quite swollen and she's talking meds to try and keep the swelling under control. The good news is that the surgeon was very surprised this morning at how little swelling she had, as he expected much more. Everyone keeps cracking these jokes about surgeons who "beat up" their patience. Medical humor - it's lost on me.

Tina has not had much of an appetite today but has been able to eat some and keep it down. Hopefully she can get a full nights sleep and wake up rested and refreshed because it wouldn't surprise me if she is put on sleep deprivation tomorrow night - I'll keep you posted so that all you Facebook people can take shifts throughout the night chatting away with her. As you have guessed sleep deprivation means we are back into the mode of needing for Tina's brain to produces some recordable seizures that will provide the necessary information to take the next step toward surgery.

We did receive some good news today regarding the future steps, assuming we get there. If they are able to find her seizure focus and if that seizure focus is operable the pain associated with that operation will be considerably less than the last two surgeries. Because they put the piece of Tina's skull that they took off yesterday in the ice chest (next to the mustard and pickles) rather than back in her head, when they go in to do the surgery to remove the seizure focus there will not be any more significant trauma to her head which means less pain. This is very helpful for Tina to know that the worst is now over regardless of how this all turns out.

We received a bunch of letters from the kids today. We were amazed to open one big envelope from Noah with a bag full of hair in it. For those of you who haven't seen Noah lately he has not had his hair cut in about a year and a half - but along with the bag full of hair was a series of six pictures that chronicled Noah's tribute too his mom as he had his grandpa not only buzz his hair off with the clippers but shaved it right down to the skin with a razor. What an awesome kid.

Today has been a very uneventful day, which is good. I think that I really crashed this morning. I couldn't hardly keep awake even after getting my Starbucks from the cafeteria and so I took a couple hour nap along with Tina. (Yes they have Starbucks, although I'm a bit suspicious that it's not quite up to the normal Starbucks standard.) It's amazing how sitting on your butt all day reading, watching TV, and surfing the Internet can really take it out of you. I'm going to try and get to bed a bit early tonight in the anticipation of doing another marathon sleep deprivation tomorrow.

Thanks again for all your prayers and support they mean more than you can imagine.

It has been a long day for Tina. She was woken up multiple times throughout the night last night in the expectation that she would go down to the OR abut 8:00. They started another IV, drew blood, talked her through what she needed to do to wash-up with an antiseptic soap, etc. Then when it was determined that she wasn't going to go down to surgery until early-afternoon they let her sleep, only to come in all in a rush at 8:30 because transport was on their way up and no one wants to keep the surgeon waiting.

As you know from my previous post the surgery went well, but clearly Tina is much more wiped out than the first one and is in more pain and so is much more highly medicated. At one point, while they were still connecting the leads from her electrodes to the computer, she thought she might be having a seizure because of the feeling of adrenalin and fast heart rate. The EEG tech checked her out and confirmed she wasn't having a seizure, and the nurse checked her out and confirmed that her heart rate and BP were right were they needed to be... turns out she was just high. Gotta love all that clean living.

As of now she's still very tired and is mostly sleeping. Oh yeah, and she has a head ache. I have to tell you my wife's the man. The nurses and EEG techs remain in awe of her. She comes back from surgery missing a large chunk of her skull and a bunch of wires hanging out of her brain and she's cracking jokes as she's being rolled down the hall. Me, I'd be bawling like a little school girl (no offence to any school girls reading this). Seriously, God has given Tina an amazing out look on all that is going on.. and an amazing pain tolerance.

They gave her anti-seizure meds last night, this morning, and tonight and then will cut her off from here on out as we once again are hoping for seizure activity that will clearly indicate which part of her brain is responsible for her seizures. Please pray that Tina will heal quickly from her surgery and that she will show some good seizure data.

As I laid there in bed last night thinking about the fact that Tina was going back in today for surgery and that we had been in that same position exactly a week earlier, I regretted the fact that I was unable to sleep next to my wife and just be near her throughout the night. I also thought about all the what-ifs. What if something happens? What if all this is for nothing? What if we sit here for another two weeks with no seizures? What if hey determine that where her seizure focus is isn't operable? All valid questions. Understand that these aren't questions that I'm asking in despair or even out of fear, but none the less they are real possibilities and they sometimes do weigh upon my mind. I remember thinking how nice it would be to just wake up and it all was a dream.

This afternoon as I waited while Tina was in surgery, I was reading "True Spirituality" by Francis Schaeffer and something he said struck me. "Is it not true that our thoughts, our prayers for ourselves and those we love, and our conversations are almost entirely aimed at getting rid of the negative at any cost - rather than praying that the negatives might be faced in the proper attitude?"

Certainly this doesn't mean that we don't pray for healing, that we don't pray for good prognosis, that we don't pray that God would bring relief to the negatives in our lives. What it does mean is that when our aim is first and foremost relief we miss the point. I live in a world that seeks to avoid pain at all costs and expends every shred of energy on experiencing the greatest about of pleasure it possibly can. I've lived 35 years on this planet, not a ton I know, but it's long enough to know that it is impossible to avoid pain, and pleasure is continually fleeting. So what to do?

I suppose I can stoically resigning myself to the fact that the world just sucks and then trudge through until I die, but if there is no hope for this life we might as well get it over with now. Or I suppose I can try and make it through with happy thoughts and a good positive outlook, but again experience has taught me that there is no amount of "good" thinking that actually results in a tangibly positive outcome in my life. So what else is there?

Well lest you think I have it all figured out, let me assure you that I am still in the process of coming to grips with the what to do with the negative things in my life. What I have come to realize is that the attitude that offers hope is the attitude as Christ. Paul says in Philippians 2, "Your attitude should be the same as that of Christ Jesus: Who, being in very nature God, did not consider equality with God something to be grasped, but made himself nothing, taking the very nature of a servant, being made in human likeness. And being found in appearance as a man, humbled himself and became obedient to death— even death on a cross!"

I need to have the same attitude as Christ and that attitude was one that did not seek his own relief, but rather he became obedient and embraced the difficulties in his life, recognizing that they had a purpose. For Christ that purpose was the salvation of the world, my purpose is not quite as noble, but it is cast from the same mold and is no less fulfilling. When I am obedient to him and embrace the difficulties in life with the right attitude, I too fulfill my purpose - that of bringing the greatest glory to my Lord and King. I have found that when I can have this attitude I'm able to endure the negative things in life and, as strange as this may sound, there is joy in my life even if there is not relief from pain.

Like I said, this is still a process for me, and anyone who tells you that coming to grips with this is simple, is either deceived or a liar. It is so easy to demand relief from the negative things in my life, and it is so hard to be willing to embrace the negative things in my life as a way in which God can build within me the same attitude of Christ, but hopefully little by little I'm getting there.

She's Out: Take Two

I just talked to the surgeon and Tina is already out and headed to recovery. He said it went very smooth and very quickly. Good job Dr. Miller. She will now be in recovery for several hours and then back up to the EMU. She'll have a CT scan at some point just to verify that everything is where it needs to be but It sounds like everything went very well.

I'll keep you posted as to how thing progress throughout the day.

She's In: Take Two

No sooner did I call my and Tina's parents to let them know that surgery would be later today rather than this morning, than did the nurse inform us that transport was on their way up to get Tina for surgery. She is in surgery now and it will likely go about 4 - 5 hours. This time there is no need to do an MRI prior to the surgery so that should cut down on the total time but the actual surgery will be about the same length as the last surgery. At this point I'm unsure how long she'll be in recovery but they are saying that if all goes well she'll go directly back to the EMU from there.

Tina is in good spirits this morning and feels like she's actually slept pretty well the last few nights - which is a good thing because she'll likely be going through another sleep deprivation later this week. It is truly amazing the amount of peace that she has had through this whole thing. I'm probably more anxious about this stuff than she is and I'm not the one getting my brain cut out, but in the end we all know that when it comes to medical stuff I'm a complete wimp.

We would once again ask for your prayers for Tina as she undergoes this surgery. We feel confident that it will go well and that God would provide his hand of protection upon her, but it is a bit more serious than the last one given the fact that this time they're popping the lid off... I mean removing a section of her skull, and so we would ask for your prayers as the surgeon performs this procedure.

I can not express enough gratitude for everyone who is praying for Tina, we have certainly felt carried along by the Holy Spirit as we have spent this past week in Cleveland on our own. We are thankful for good friends who have made the sacrifice to travel to Cleveland to spend time with us as well as Tina's friend from Newaygo who now lives down here and surprised her with a visit last night, but in the end being so far away from home has been difficult for Tina. All the same, we have felt God's presence in our lives, and have not felt alone.

Please pray and I'll keep you posted.

Still Sleeping

At some point last night somebody from the surgical team rolled through and thought that Tina's surgery would likely end up being sometime early afternoon. We haven't been given a definitive time yet but given the fact that it's nearly 8:00 and Tina is still sleeping I'm pretty sure she won't be heading down to OR any time soon.

I'll post more when I know more.

Surgery Number Two

Well tomorrow (Wednesday) Tina will be going back into surgery to once again have electrodes placed in/on her brain in order to try and determine where her seizures are coming from. This time the surgery is a bit more involved and a bit more complicated. Still overall the risk is very low and is the next step we need to take to help Tina become seizure free.

She will likely be headed back down to the OR from the EMU around 8:00 or so. I'm not completely sure what time she'll actually go into surgery but it will be mid-morning. I'll keep you posted as to when she goes in and how things progress. Her recovery will be a bit harder this time but they will be keeping a close eye on her pain and help her manage through that.

As we we sit here in the EMU and anticipate surgery tomorrow morning there is a certain heightened level of anxiety but Tina and I are again confident in knowing that God is in control of all that is going to happen and is not surprised by the fact that we are headed back in for another surgery.

Thanks again for your prayers and your encouragement.

Two Steps Forward, One Step Back

Well, the doctors were able to "read" the EEG from Tina's seizure last night but it has mixed results. They found that the seizures are not coming from the part of Tina's brain that they thought they were coming from. They had originally thought they were coming from a very interior part of her brain but based on her EEG they now believe that they are coming from a place much near the surface of her brain. On one hand this is good because there is less long term risk to removing part of her brain that is nearer the surface, but there is a problem. The depth electrodes that they inserted during her surgery last Wednesday are not in the correct location to be able to pin point a seizure focus that is nearer the surface of her brain. That means that they will need to remove the depth electrodes and replace them with electrodes that are placed on the surface of her brain (another surgery) and then once again wait for more seizures to provide the data necessary to locate where her seizures are coming from.

We were just given the word that Wednesday they will be going in and surgically removing at least some of the depth electrodes and then add electrodes to the surface of her brain. She will then return to the EMU and wait another week in the hope of having more seizures that will tell them where her seizures are coming from. Assuming that happens they will then likely do surgery a week from Wednesday (7/28 I think).

Please continue to pray for Tina. She doesn't always do well with sudden changes in plan and the reality of staying in the EMU for another week is not one she's real excited about. They are also telling her that the surgery to place the electrodes on the brain's surface is considerably more painful because they have to now remove a section of her skull to do this. Amazingly Tina has no pain at all associated with her depth electrodes, so again she's not all that excited about sitting in the EMU again but this time with pain.

Please pray for our Children as well as this will mean another week away from us. They are doing well as they stay with family but I'm sure it will begin to wear on them as time goes on.

Thanks again to all who continue to pray for us and send your notes of encouragement as we once again walk down a path that, at least to us, is "untraceable."

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Seizure

It seems hard to believe that it was only a week ago that we left Rockford to drive down to Cleveland but believe it or not the time does go by fairly quickly (other than when you're sitting up at 3:30am and realize that you still have at least 16 hours left before you can go to sleep).

Yesterday started off a bit rough for Tina. As I mentioned on my last post they had Tina on sleep deprivation and when it was all said and done she ended up staying awake from 7:00am on Thursday morning to 10:30pm on Friday night (about 39 hours with no sleep). At about 3:30pm on Friday the EEG tech told her that if she actually made it to 7:00pm (which was her original goal) she would hold the record for sleep deprivation. I think they tell you that they want you to stay up until 7:00pm the next day just as something to shoot for, fully expecting that you'll only make it to about 4:00am. Little do they know that when Tina is motivated to get something done there's little you can do to stop her, and let me tell you she was motivated to have a seizure. She figured that if sleep deprivation would cause a seizure then she would just stay awake until she had one. Finally, by 10:00pm when the Tiger game went into a rain delay, I was able to convince her that perhaps 40 hours with no sleep might be good enough and she should try to get some shut eye.

She slept for maybe 10 or 11 hours but when she woke up yesterday morning I think the disappointment finally hit her that she had stayed up for almost 40 yours with nothing to show for it. She was pretty discouraged at the thought that we were going to have to sit in the EMU for months. We were able to talk and pray about it and as the day went on she felt better and better (thanks to all of you who are praying for Tina - your prayers were certainly felt as we battled the discouragement of no seizures).

We spent the rest of the day watching the Tigers get trounced, again, by the Indians, played a rousing game of Skip-Bo (the Hovinghs would be proud), watching some cool cable shows we never get to see at home, and plenty of reading and Facebook.

At about 9:30 last night Tina decided to catch up on Facebook stuff while I watched a movie, when the nurse came in and asked Tina how she was doing, which we didn't think much of until she asked her to remember the color blue and asked her if she knew her name. Tina looked at her funny and rather than answering her asked, "why, am I having a seizure?" The nurse said that the EEG tech said she was showing some activity, but when Tina answered all her questions the nurse left and Tina went back to Facebook. 20 seconds later the nurse came back in and started asking more intense questions about who I was, wanted her to point at the window, and those kinds of things (pretty standard questions for when someone is having a seizure).

On a side note: does it make me a sick person that about a year ago when our last cat (Scarlet) was having a seizure in the basement and Tina came and got me wanting me to go down and help her, that I went down the stairs and said, "Kitty, remember the color green. Point at the window, Kitty. Do you know what day it is? Kitty, where are you?" I guess it's just how my sick mind works. Tina thought it was funny... I think.

Again Tina was able to answer all of the nurses questions just fine and didn't feel anything funny other than she felt like her eyes were being strained looking at the computer. The longer they asked her questions Tina finally said that if they kept asking questions she just might have a seizure and about that time she stopped and said that yes she now felt the seizure. Unfortunately the seizure didn't stop there. It continued on and eventually she ended up having a grand mal. In all the whole seizure lasted maybe 5 minutes or so and it sounds like they may have gotten some good information from the simple-partial seizure she had before she generalized (grand mal).

We are very thankful that Tina was able to have a seizure, which sounds weird, but we're still not sure yet if that seizure provided enough information for them to be able to feel confident with moving ahead with surgery on Wednesday. Ideally they want her to have several seizures before they move forward with surgery to be sure that all of her seizures are in fact coming from the same location in her brain. If they don't feel comfortable with what they have they will hold off on surgery until she has more seizures even if that means rescheduling her surgery to a later date.

For those of you who have never witnessed a grand mal seizure, after the seizing part ends the brain does a kind of "re-boot" and shuts down completely for a while. Tina was unconscious for about half an hour or so and eventually "woke" up and was wondering why I was standing there looking at her EEG monitor. I am so thankful that Tina has no memory of her seizures, no doubt that the actual seizures are far more traumatic for those who witness them than it is for those who actually have them. To Tina she remembers them coming in asking her all her questions, and then eventually feeling her deja-vu and her normal symptoms of her simple-partial seizures, then she just feels like she must have fallen asleep and then woke up from a nap with no other memory.

As for me, I hate watching grand mal seizures. Tina tries talking me into not watching, but there is no way that I can not watch. As much as I hate it I need to witness it so that I can accurately communicate what I see to the doctors. Even this morning they wanted to know if there was anything different with this seizure from her others - if I don't' watch them I can't pass on that information. I hate it, but I also know that this is one of those occasions when I need to strap on the armor, suck it up, and do what I need to do for my wife. As much as I would like to check out when she's thrashing around like she's demon possessed, I need to be there and stay there. I hope that doesn't sound too caviler but that's the way it is.

The second thing that I had to come to grips with as I sat in Tina's room after her seizure, when the nurses and EEG techs had left, and Tina was still unconscious, was that Tina had just had a seizure and the possibility of brain surgery had become that much more of a real possibility. I realized that although I had been praying for a seizure there was a certain part of me that was hopeful that if she didn't have any seizures then they wouldn't be able to do surgery - not anymore. This reminded me of what we call at our church a "theology of suffering."

In a nutshell a theology of suffering is the recognition that first of all we live in a broken world. Because of sin (mine included) this world no longer works. Pain, sickness, oppression, disease, and suffering are all a result of the sin that started with Adam back in the garden of Eden and is perpetuated each day by every one of us. However, the good news is that "where sin increased, grace increased all the more..." (Romans 5:20) So if sin (mine included) is the cause of so much suffering in the world, it is grace, God's grace, which redeems the lost and broken world that we live in even if for the moment we must remain in it.

So as I sat and watched my wife lay there unconscious from her seizure, faced with the real possibility of brain surgery I was reminded of the bigger picture that my King gave his life to redeem a world that do to it's sin makes suffering possible and that although sin and the effects of sin increase all around me, grace increases MORE.

I cannot tell you, in spite of the difficulty of the moment, how much hope there is in knowing that pain and suffering are not the final word on our existence here on earth. Earlier in chapter 5 of Romans Paul says:

And we rejoice in the hope of the glory of God.

Not only so, but we also rejoice in our sufferings,

because we know that suffering produces perseverance;

perseverance, character; and character, hope.

And hope does not disappoint us,

because God has poured out his love into our hearts by the Holy Spirit,

whom he has given us. You see, at just the right time,

when we were still powerless, Christ died for the ungodly.

Very rarely will anyone die for a righteous man,

though for a good man someone might possibly dare to die.

But God demonstrates his own love for us in this:

While we were still sinners, Christ died for us.

-Romans 5:2b-8

How grateful I am that my King has died to give me hope that my suffering is not in vain, but that my suffering has a purpose and that purpose is to produce hope in me through the Holy Spirit. Hope that because Christ died for me and I've accepted his gift of salvation, one day, when he overthrows the present order of things and sin, and pain, and suffering no longer exist, I will be there to see it - what a glorious day that will be.

Tina is doing well this morning. She is much encouraged by her seizure last night and is her normal self. We are still waiting to hear the results of the data from her seizure last night and what that might mean for surgery on Wednesday. We'll keep you posted.