It's official, we'll be headed home tomorrow (Friday). There are two things that need to be done before we can head out. First, Tina's PIC line needs to be taken out, which is a bigger deal than just pulling and IV so the Dr. needs to do it. Second, someone from neurosurgery needs to change her dressing and make sure that all of her incisions look like they're healing correctly. As soon as those things are done we'll be hitting the road.
Today was the conference where the head neurologist discussed Tina with a whole team of people. He said that they talked for quite a while and no one came up with any new ideas. They are still very convinced that Tina's seizures are very focused and are all coming from the same place in her head, they just don't know where, and don't know how to find it. He said that they would be taking Tina's data and putting it through a new imaging process that might reveal something new, but he's not very hopeful. At this point we just need to manage Tina's seizures as best we can with medicine and wait to see if any new techniques are developed in the future that they can apply to Tina. We haven't ruled out the possibility of looking for a second opinion but we won't cross that road until after we get home.
Thanks again for all of your prayers and words or encouragement over the course of the last week and a half, we so appreciate it.
Oh, the depth of the riches of the wisdom and knowledge of God! How unsearchable his judgments, and his paths beyond tracing out! -Romans 11:33
Thursday, January 19, 2012
Wednesday, January 18, 2012
She's Out... Again
Just wanted to let everyone know that Tina's out of surgery. I talked to the surgeon and he said that everything went well, and that he was able to remove some more hardware that had been left in the last time, which should make Tina happy. We're hoping that they're going to let Tina go back up to the EMU for recovery, which is a bit out of the normal way they do things. Typically, when a patient is just here to recover from a neurosurgery they would go to a neurosurgery unit not the EMU but we requested that Tina be allowed to recover in the EMU where everything is familar and everyone knows her. The surgeon thought that he could make this happen, but he's still waiting on final confirmation that this will be the case.
Thanks again to everyone who prayed for protection durring surgery, please pray for a quick recovery so we can get home.
Thanks again to everyone who prayed for protection durring surgery, please pray for a quick recovery so we can get home.
She's In... Early
Apparently the doctors are as anxious as Tina to get this show on the road so they moved her surgery up. They had an open OR and available staff so they got her in early, which is good. That means less time for Tina to have to sit around and wait, at least this way she'll spend the rest of today sleeping... hopefully.
Thanks again for all of your prayers and encouragement. I'll post again letting everyone know she's out of surgery.
Thanks again for all of your prayers and encouragement. I'll post again letting everyone know she's out of surgery.
Some Assembly Required
Today Tina is headed back in to reassemble her head. Sometime around 1:15 today they'll dig her skull out of the fridge, pull the electrodes out of her brain and snap everything back together. I expect that they'll give her a day or two for recovery before we head back home which means that we should be home either Friday or Saturday - my guess is Saturday.
Yesterday seemed like a very long day. It's like when you've gone on vacation and it seems like it takes you twice as long to get home as it did to get there. That's what it was like for us... except without the vacation. Once they told us that they would be putting Tina back together and sending us home, we just wanted to be done and get out of here - Tina more than me.
Yesterday we both were a bit numb and in a daze. Tina slept quite a bit, and I got some work done, but overall we just wanted to get the day over with so we could get her head put back together and go home. We're still trying to sort out all of the implications of what it means that they're not able to perform this surgery on Tina. All of the doctors and nurses are stupefied that the head neurologist is stupefied. Tina's surgeon came up yesterday to talk us through the surgery for today and he is simply amazed that the neurologist is at a loss. He said that they'll be talking and writing about Tina for years. (Now if there was only a way we could capitalize on that...) Not exactly the way you want to spend your 15 minutes of fame - the person that stumped the experts.
Overall I think Tina is handling the situation well and is determined to make the best of it. Of course anything sounds doable when compared to sitting in a hospital bed for another 4 weeks. At this point she'd tell you she could jump the Grand Canyon if that meant getting out of the hospital. One of the nurses asked us if we would consider coming back - Tina and I just laughed. Honestly we're not sure what the next step will be for us, but for right now our goal is to just get Tina back together, get back home to our kids, and get settled back into life. We'll see what comes next.
A very good friend of mine often reminds me of two things that always come back to me in these situation. The first is that God promises to give us what we need for today. My friend constantly reminds me that if I'm grounded in God's word it will be a lamp for my feet and a light for my path but not a gigantic spotlight on what's a mile down the road. The second thing he often reminds me of is that when I finally do get a mile down the road God will still be walking right beside me and he will still be illuminating my next step.
Too often I can get caught up in fearing what will happen in the future. I can easily project my fear into what might happen and what circumstances might bring and the unknown difficulty that awaits down the road. However, it is hard to remember to project Jesus along side those circumstances and future difficulties. It's hard to remember that God is not just the God of the present but he is also the God of the future. The future is not unknown to God and he will be as much with me in the future as he is in the present. If I can trust God to walk with me today, I can trust him to walk with me tomorrow and the next day and the next.
These truths serve as a huge encouragement to me: God gives me what I need for today, and no matter what happens in the future, He is not surprised and he will provide all that I need then as well. (Thanks Jim.)
Please continue to pray for Tina. Pray for her safety during surgery, a speedy recovery, and that discouragement would not creep in. Please also pray that through this all Jesus Christ would be made famous and that his glory would shine through us.
Romans 8:18 I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.
This is our great desire that we would keep our eyes on the reality that our lives tell but a small piece of a much larger story and it is only in the context of this larger story that our lives have any significance at all. You see, this larger story is the one that God has been telling since the beginning of human history. It is one in which he loves mankind and is on a rescue mission to save us from ourselves so that we can be with him forever. When I can keep my eyes on that reality it is then that I can say with the apostle Paul, "I consider that my present sufferings are not worth comparing with the glory that will be revealed in me." You see, in the light of eternity our present sufferings don't even register because of our hope in the salvation that comes through faith in Jesus Christ.
Yesterday seemed like a very long day. It's like when you've gone on vacation and it seems like it takes you twice as long to get home as it did to get there. That's what it was like for us... except without the vacation. Once they told us that they would be putting Tina back together and sending us home, we just wanted to be done and get out of here - Tina more than me.
Yesterday we both were a bit numb and in a daze. Tina slept quite a bit, and I got some work done, but overall we just wanted to get the day over with so we could get her head put back together and go home. We're still trying to sort out all of the implications of what it means that they're not able to perform this surgery on Tina. All of the doctors and nurses are stupefied that the head neurologist is stupefied. Tina's surgeon came up yesterday to talk us through the surgery for today and he is simply amazed that the neurologist is at a loss. He said that they'll be talking and writing about Tina for years. (Now if there was only a way we could capitalize on that...) Not exactly the way you want to spend your 15 minutes of fame - the person that stumped the experts.
Overall I think Tina is handling the situation well and is determined to make the best of it. Of course anything sounds doable when compared to sitting in a hospital bed for another 4 weeks. At this point she'd tell you she could jump the Grand Canyon if that meant getting out of the hospital. One of the nurses asked us if we would consider coming back - Tina and I just laughed. Honestly we're not sure what the next step will be for us, but for right now our goal is to just get Tina back together, get back home to our kids, and get settled back into life. We'll see what comes next.
A very good friend of mine often reminds me of two things that always come back to me in these situation. The first is that God promises to give us what we need for today. My friend constantly reminds me that if I'm grounded in God's word it will be a lamp for my feet and a light for my path but not a gigantic spotlight on what's a mile down the road. The second thing he often reminds me of is that when I finally do get a mile down the road God will still be walking right beside me and he will still be illuminating my next step.
Too often I can get caught up in fearing what will happen in the future. I can easily project my fear into what might happen and what circumstances might bring and the unknown difficulty that awaits down the road. However, it is hard to remember to project Jesus along side those circumstances and future difficulties. It's hard to remember that God is not just the God of the present but he is also the God of the future. The future is not unknown to God and he will be as much with me in the future as he is in the present. If I can trust God to walk with me today, I can trust him to walk with me tomorrow and the next day and the next.
These truths serve as a huge encouragement to me: God gives me what I need for today, and no matter what happens in the future, He is not surprised and he will provide all that I need then as well. (Thanks Jim.)
Please continue to pray for Tina. Pray for her safety during surgery, a speedy recovery, and that discouragement would not creep in. Please also pray that through this all Jesus Christ would be made famous and that his glory would shine through us.
Romans 8:18 I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.
This is our great desire that we would keep our eyes on the reality that our lives tell but a small piece of a much larger story and it is only in the context of this larger story that our lives have any significance at all. You see, this larger story is the one that God has been telling since the beginning of human history. It is one in which he loves mankind and is on a rescue mission to save us from ourselves so that we can be with him forever. When I can keep my eyes on that reality it is then that I can say with the apostle Paul, "I consider that my present sufferings are not worth comparing with the glory that will be revealed in me." You see, in the light of eternity our present sufferings don't even register because of our hope in the salvation that comes through faith in Jesus Christ.
Monday, January 16, 2012
Deja Vu All Over Again
Last night was another eventful night. Tina ended up having another 4 seizures between 1:00am and 10:00am. They had put her back on a low dose of her anti-seizure meds the night before so the good thing was that these seizures didn't progress into a grand mal which made them much easier to treat. They came on, lasted for a couple of minutes, and went away on their own. At the same time it still makes for a long night when everyone comes flying in, whips on lights, and start asking questions out of a dead sleep. Then it's hard to come off from the adrenaline rush and get back to sleep. We ended up sleeping until around 9:00 when nurses started coming in to do their normal assessments.
Late morning was the big moment of truth when the head neurologist made his rounds. Unfortunately the news wasn't good. They had analyzed all 7 seizures that Tina had and it did appear that all 7 were coming from the same exact location, the problem is that the location was not where the electrodes are, it's someplace else. What that means is that they implanted the electrodes in an area of her brain where the seizures are NOT coming from. In the words of Yogi Berra- it felt like deja vu all over again.
I was waiting for him to say that they needed to do another surgery to move the electrodes to the new likely location, but that wasn't what we heard. Instead he said that based on all of the previous seizures that Tina had when we were here in 2010 along with these seizures he's now completely "stumped" as to what to do next. We asked if moving electrodes would be an option. He said that it would be if he knew where to move them to.
He said this is the first time in his entire practice that he's ever seen something like what has happened with Tina. In a nut shell they've chased Tina's seizure focus in a circle and are basically back where they started and don't know which way to go. He still feels that Tina's seizure focus is very focused and if it could be found it is still very likely that it could be removed with little risk and high likelihood of success. However, at this point, to place electrodes anywhere else in her brain would basically be a shot in the dark. It would be a random placement with no idea if they were even close to the right place. The risk is too high to just roll the dice like that.
What all this means is that as of tonight Tina is scheduled to go back in for surgery on Wednesday to have all of the electrodes taken out of her head, have her skull replaced, and we will likely be headed home either Friday or Saturday - for all practical purposes, in the same boat we came down here in.
They will be presenting Tina's case to a review conference later in the week, and depending on what insight comes out of that, there may still be a possibility that they would suggest some other options, but the head neurologist doesn't hold out much hope that this will happen.
Once again Tina and I are faced with a reality that is not what we had in mind when we decided to come back down here to Cleveland. We had so hoped that this would be the beginning of the end for this journey that we've been on for the past 5 years, but it doesn't appear that it will go that way. As you can imagine we are both disappointed and are reeling to a certain degree from this news and are still coming to grips with what it means for our future. Tina's emotions are mixed - one one hand she's disappointed at the news we got today, but on the other hand she's happy to know that we'll be headed home much earlier than the 5 weeks we sat here the last time.
Please continue to pray for us as we work through these latest developments, pray for the upcoming surgery, and pray that God would continue to receive all the glory due him.
Late morning was the big moment of truth when the head neurologist made his rounds. Unfortunately the news wasn't good. They had analyzed all 7 seizures that Tina had and it did appear that all 7 were coming from the same exact location, the problem is that the location was not where the electrodes are, it's someplace else. What that means is that they implanted the electrodes in an area of her brain where the seizures are NOT coming from. In the words of Yogi Berra- it felt like deja vu all over again.
I was waiting for him to say that they needed to do another surgery to move the electrodes to the new likely location, but that wasn't what we heard. Instead he said that based on all of the previous seizures that Tina had when we were here in 2010 along with these seizures he's now completely "stumped" as to what to do next. We asked if moving electrodes would be an option. He said that it would be if he knew where to move them to.
He said this is the first time in his entire practice that he's ever seen something like what has happened with Tina. In a nut shell they've chased Tina's seizure focus in a circle and are basically back where they started and don't know which way to go. He still feels that Tina's seizure focus is very focused and if it could be found it is still very likely that it could be removed with little risk and high likelihood of success. However, at this point, to place electrodes anywhere else in her brain would basically be a shot in the dark. It would be a random placement with no idea if they were even close to the right place. The risk is too high to just roll the dice like that.
What all this means is that as of tonight Tina is scheduled to go back in for surgery on Wednesday to have all of the electrodes taken out of her head, have her skull replaced, and we will likely be headed home either Friday or Saturday - for all practical purposes, in the same boat we came down here in.
They will be presenting Tina's case to a review conference later in the week, and depending on what insight comes out of that, there may still be a possibility that they would suggest some other options, but the head neurologist doesn't hold out much hope that this will happen.
Once again Tina and I are faced with a reality that is not what we had in mind when we decided to come back down here to Cleveland. We had so hoped that this would be the beginning of the end for this journey that we've been on for the past 5 years, but it doesn't appear that it will go that way. As you can imagine we are both disappointed and are reeling to a certain degree from this news and are still coming to grips with what it means for our future. Tina's emotions are mixed - one one hand she's disappointed at the news we got today, but on the other hand she's happy to know that we'll be headed home much earlier than the 5 weeks we sat here the last time.
Please continue to pray for us as we work through these latest developments, pray for the upcoming surgery, and pray that God would continue to receive all the glory due him.
Sunday, January 15, 2012
Still A Bit High
This will be a short post. Today was pretty quiet. Like I said in my last post, Tina was given Ativan last night and so she slept until just after noon. The rest of the day we watched some football, watched a movie, and just kind of hung out. Over all Tina is still pretty out of it. It's a combination of the drugs she was given last night and having 3 grand mal seizures. We're both pretty tired, so we'll be turning in soon, and I hope we make it through the night with little interruption.
Please pray for us as we will likely be talking with the head neurologist tomorrow and be making plans for the next step. We're not at all sure what we will hear, but please pray that we will know how to process it well and make good decisions. Pray for God's lead.
Please pray for us as we will likely be talking with the head neurologist tomorrow and be making plans for the next step. We're not at all sure what we will hear, but please pray that we will know how to process it well and make good decisions. Pray for God's lead.
More Seizures
As I promised yesterday, Tina's first seizure was only the beginning. After we watched Denver get trounced by New England, I told Tina that I needed to get some sleep because I anticipated a long and eventful night and she didn't disappoint.
Several hours after we went to bed, about 1:00am, I was woken up by nurses racing in, lights being flipped on, and Tina's seizure alarm going off. (Each patient in the EMU has a button that they can push when they feel a seizure beginning and it puts out an audible alarm on the entire unit.) Trust me, this is not a fun way to wake up. I'm not sure how long the seizure had been going on prior to the nurses coming in but it was a very short period of time before she went into another grand mal. This pattern is pretty typical. In all, I think there has only been one time when Tina was off her anti-seizure medication when she didn't eventually have a grand mal seizure after her simple partial seizures.
I sat up for an hour reading until she came around. She hadn't realized that she had had a grand mal again, she thought it had only been another simple partial. She was feeling better so about 2ish I got back into bed and tried to come off my adrenalin rush. About the time I think I fell asleep again, 2:45 or so, I woke up again to nurses coming in, lights going on, and Tina's alarm sounding. This time her partial seizure lasted quite a while and again it ended in a grand mal. Unfortunately, this seizure lasted a very long time by any standard. She eventually came out of it naturally, but the Dr. ordered that she be given a dose of Ativan, and they're going to start her back up on her anti-seizure meds yet tonight... I mean this morning. For now they have three seizures to analyze, and they probably feel that with the seizures getting more frequent and longer, the data they have is enough for now. This means she'll probably be very tired tomorrow, and it should be a very quiet day for her.
With tomorrow being Sunday I would be surprised if they gave us much detailed information as far as what they've learned from the data and the next step. That will probably happen on Monday. In the mean time Tina's seizures are probably done... for now.
Although we are excited about Tina's seizures, and certainly see it as an answer to prayer, I have to admit that I am a bit guarded at this point. Our last trip to Cleveland started this same way, with plenty of seizures to begin with, but instead of doing the surgery to remove her seizure focus they did surgery to move electrodes around and in the end her seizures stopped and we went home before they could remove her seizure focus.
I don't say that in a negative way at all - for those who know me well you know that I am a hopeless optimist. I can find the "silver lining" in just about anything. So I'm not guarded because I’m thinking the worse, but because I don't like putting God in a box. We all want things to go a certain way. We think that if we pray enough then God will answer our prayers. Tina will come to Cleveland, she'll have 3 seizures in the first 48 hours, they'll analyze the data, do the surgery, she'll be seizure free, and home before she's missed. Don't get me wrong, I believe that God can do this, and it is exactly what I'm praying for, but I also believe what Paul said in Romans 11:33.
Make no mistake, if I could choose my own path it would be the one I described above, but that doesn't mean that's God's path. In fact, if I read the passage right, it says that often God's path is not one that we are able to perceive or the one we’d choose - it's beyond tracing out. God's path is not our path. Does that make God unloving, or unjust? Not at all. You see God answers all our prayers with one of three answers. Yes, no, or later. Just like any loving father would do with his kids. Sometimes I say yes, sometimes I say no, and sometimes I say yes but not right now - and the evidence of my being a loving father isn't that I always say yes, it's that whatever I say, whether it's yes or no, it has the best interests of my son at heart.
If Noah came to me and asked if he could go to a friend’s house on a Friday night, I almost always would say yes - assuming we didn't already have something planned and we know his friend. If Noah came to me and asked if he could repel off the second story roof of the house using a piece of rope he found at school, I'm going to say no. If Noah came to me and asked for a cell phone I’m going to say No, not now, later. Am I ok with Noah having a cell phone? Yes, just not now. My point is this, how I answer my son’s request is not an indication of whether or not I love him, even though when I say no to repelling from the second story he may think I’m being unloving. You see God’s paths are not our paths. We may perceive that God’s answer to our request is unloving, but it’s not. It never is. God answers us just as a loving father would. In his infinite wisdom he hears our request and knows what the most loving thing is. Sometimes it’s yes, sometimes it’s no, and sometimes it’s later.
I pray that God will listen to my request (and yours) and he will say yes, but I also recognize that God’s path is untraceable and I don’t presume that I know what is best for Tina, so if God says no or if he says later, I trust that he loves Tina more than me and he is doing exactly what any loving Father would do – loving her.
Several hours after we went to bed, about 1:00am, I was woken up by nurses racing in, lights being flipped on, and Tina's seizure alarm going off. (Each patient in the EMU has a button that they can push when they feel a seizure beginning and it puts out an audible alarm on the entire unit.) Trust me, this is not a fun way to wake up. I'm not sure how long the seizure had been going on prior to the nurses coming in but it was a very short period of time before she went into another grand mal. This pattern is pretty typical. In all, I think there has only been one time when Tina was off her anti-seizure medication when she didn't eventually have a grand mal seizure after her simple partial seizures.
I sat up for an hour reading until she came around. She hadn't realized that she had had a grand mal again, she thought it had only been another simple partial. She was feeling better so about 2ish I got back into bed and tried to come off my adrenalin rush. About the time I think I fell asleep again, 2:45 or so, I woke up again to nurses coming in, lights going on, and Tina's alarm sounding. This time her partial seizure lasted quite a while and again it ended in a grand mal. Unfortunately, this seizure lasted a very long time by any standard. She eventually came out of it naturally, but the Dr. ordered that she be given a dose of Ativan, and they're going to start her back up on her anti-seizure meds yet tonight... I mean this morning. For now they have three seizures to analyze, and they probably feel that with the seizures getting more frequent and longer, the data they have is enough for now. This means she'll probably be very tired tomorrow, and it should be a very quiet day for her.
With tomorrow being Sunday I would be surprised if they gave us much detailed information as far as what they've learned from the data and the next step. That will probably happen on Monday. In the mean time Tina's seizures are probably done... for now.
Although we are excited about Tina's seizures, and certainly see it as an answer to prayer, I have to admit that I am a bit guarded at this point. Our last trip to Cleveland started this same way, with plenty of seizures to begin with, but instead of doing the surgery to remove her seizure focus they did surgery to move electrodes around and in the end her seizures stopped and we went home before they could remove her seizure focus.
I don't say that in a negative way at all - for those who know me well you know that I am a hopeless optimist. I can find the "silver lining" in just about anything. So I'm not guarded because I’m thinking the worse, but because I don't like putting God in a box. We all want things to go a certain way. We think that if we pray enough then God will answer our prayers. Tina will come to Cleveland, she'll have 3 seizures in the first 48 hours, they'll analyze the data, do the surgery, she'll be seizure free, and home before she's missed. Don't get me wrong, I believe that God can do this, and it is exactly what I'm praying for, but I also believe what Paul said in Romans 11:33.
"Oh, the depth of the riches of the wisdom and knowledge of God! How unsearchable his judgments, and his paths beyond tracing out!"
Make no mistake, if I could choose my own path it would be the one I described above, but that doesn't mean that's God's path. In fact, if I read the passage right, it says that often God's path is not one that we are able to perceive or the one we’d choose - it's beyond tracing out. God's path is not our path. Does that make God unloving, or unjust? Not at all. You see God answers all our prayers with one of three answers. Yes, no, or later. Just like any loving father would do with his kids. Sometimes I say yes, sometimes I say no, and sometimes I say yes but not right now - and the evidence of my being a loving father isn't that I always say yes, it's that whatever I say, whether it's yes or no, it has the best interests of my son at heart.
If Noah came to me and asked if he could go to a friend’s house on a Friday night, I almost always would say yes - assuming we didn't already have something planned and we know his friend. If Noah came to me and asked if he could repel off the second story roof of the house using a piece of rope he found at school, I'm going to say no. If Noah came to me and asked for a cell phone I’m going to say No, not now, later. Am I ok with Noah having a cell phone? Yes, just not now. My point is this, how I answer my son’s request is not an indication of whether or not I love him, even though when I say no to repelling from the second story he may think I’m being unloving. You see God’s paths are not our paths. We may perceive that God’s answer to our request is unloving, but it’s not. It never is. God answers us just as a loving father would. In his infinite wisdom he hears our request and knows what the most loving thing is. Sometimes it’s yes, sometimes it’s no, and sometimes it’s later.
I pray that God will listen to my request (and yours) and he will say yes, but I also recognize that God’s path is untraceable and I don’t presume that I know what is best for Tina, so if God says no or if he says later, I trust that he loves Tina more than me and he is doing exactly what any loving Father would do – loving her.
Saturday, January 14, 2012
Seizure
Today started out as so many other days have started here in the EMU. We were promptly woken up at 8:00am by a nurse wanting to take vitals on Tina. We got up, Tina ordered breakfast, and I took a shower. Tina has been fighting discouragement on and off over the last couple of days, wondering if she's made the right decision to come back down here, but this morning she was determined to have a good day even if she had no seizures. After breakfast we played a rousing game of Skipbo (I kicked her butt), and then Tina decided that she would get caught up on e-mail and Facebook messages.
Tina hasn't had much of an appetite but has felt light headed on and off again, so she thought that maybe she'd better get something to eat. She ordered lunch and while we were waiting for that to come up, we decided to Skype with my parents for a few minutes and just check in on things at the home front.
Tina's food arrived while we were talking to my folks and Tina progressively felt more and more light headed, so we got off with my parents and figured that she'd better eat something. It wasn't a couple minutes later, before she even started eating that she felt a seizure coming on. I won't go into the details but the seizure did end up progressing into a grand mal.
We are very grateful today that first Tina had a seizure and second that it didn't require any drugs to bring her out of it. The bad thing about giving her drugs to bring her out of a seizure is that it's pretty much guaranteed that after the drugs she won't have a seizure for at least another 48 hours or longer.
I love to watch the staff work here when Tina goes into a seizure. The nurse that was on today was one that we grew to appreciate very much the first time we were here are she has as much experience with seizures as anyone on the unit. It never ceases to amaze me how calm, and relaxed these people are when someone is having a seizure. Watching a seizure can be such a traumatic thing, but once you get it in your head that people don't die of seizures and that they eventually come out of it, it definitely keeps things in perspective. There was a nursing student who was assisting today and Tina's was the first seizure she has ever seen. When it was over she was very freaked out. Tina is always very tired and wiped out after her seizures, and she's sleeping now.
From here it would be good for Tina to have several more seizures just so that they have multiple sets of data to compare. That way they can make sure that the seizures are all coming from the same location. However, Tina's history is one that when she has one seizure they tend to come in rapid succession each one a bit more difficult. Please pray for strength for Tina, for wisdom so that the doctors can accurately analyze the data, and insight for the nursing staff to accurately discern how best to help Tina through these seizures.
We praise our God and King who rules over all things. Who is sovereign over seizures and brains and who lovingly provides everything that we stand in need of, and knows better than we do exactly what that might be.
Tina hasn't had much of an appetite but has felt light headed on and off again, so she thought that maybe she'd better get something to eat. She ordered lunch and while we were waiting for that to come up, we decided to Skype with my parents for a few minutes and just check in on things at the home front.
Tina's food arrived while we were talking to my folks and Tina progressively felt more and more light headed, so we got off with my parents and figured that she'd better eat something. It wasn't a couple minutes later, before she even started eating that she felt a seizure coming on. I won't go into the details but the seizure did end up progressing into a grand mal.
We are very grateful today that first Tina had a seizure and second that it didn't require any drugs to bring her out of it. The bad thing about giving her drugs to bring her out of a seizure is that it's pretty much guaranteed that after the drugs she won't have a seizure for at least another 48 hours or longer.
I love to watch the staff work here when Tina goes into a seizure. The nurse that was on today was one that we grew to appreciate very much the first time we were here are she has as much experience with seizures as anyone on the unit. It never ceases to amaze me how calm, and relaxed these people are when someone is having a seizure. Watching a seizure can be such a traumatic thing, but once you get it in your head that people don't die of seizures and that they eventually come out of it, it definitely keeps things in perspective. There was a nursing student who was assisting today and Tina's was the first seizure she has ever seen. When it was over she was very freaked out. Tina is always very tired and wiped out after her seizures, and she's sleeping now.
From here it would be good for Tina to have several more seizures just so that they have multiple sets of data to compare. That way they can make sure that the seizures are all coming from the same location. However, Tina's history is one that when she has one seizure they tend to come in rapid succession each one a bit more difficult. Please pray for strength for Tina, for wisdom so that the doctors can accurately analyze the data, and insight for the nursing staff to accurately discern how best to help Tina through these seizures.
We praise our God and King who rules over all things. Who is sovereign over seizures and brains and who lovingly provides everything that we stand in need of, and knows better than we do exactly what that might be.
Nothing Yet
I'm just going to put up a quick post. Today was a pretty quiet day. Tina is now disconnected from everything except her EEG wires, was able to get her own clothes on, and is able to get around a bit to use the bathroom and sit in a chair. Although she shows some seizure type activity on her EEG monitor, still no seizures. Sorry I didn't post more, but there wasn't much to post, and we just kind of rested up today- I'm sure we're in for sleep deprivation tomorrow if Tina doesn't have anything tonight or tomorrow.
Thursday, January 12, 2012
Settled In
We are now all settled in. Once Tina got her head rewrapped this morning she really started to go up hill. By the end of the day she's pretty much her normal self. She feels good - although still with a bit of a headache - and is trying to get a good nights sleep before the drama all gets going (hopefully tomorrow).
She took a long nap this afternoon, ate a good dinner sitting on the side of her bed, and spent several hours getting more electrodes installed on the surface of her head - the outside part. She still has her catheter in until the morning when they'll take that out - she didn't want to have to get up in the night to go to the bathroom. (I'm sure that was too much information, but that's ok, she hasn't started reading any of my blog posts so I'll be good at least until tomorrow.) The reality is that going into the bathroom with a 15 foot cable coming out of your head isn't the easiest thing to do, so I don't blame her for wanting to go one more night without that hassle.
She's feeling pretty tired so she's already down for the night. Not that I'm trying to get picky but it sure would be nice if she could get a full night's sleep and then start having seizures around 9:30am. Trust me, being woken up out of a dead sleep at 2:30am for a seizure is no fun. They come flying in, whip all the lights on, and start asking all kinds of questions... trust me not fun. It's much nicer (if there is such a thing) to have a seizure in the morning after a good night's sleep. But like I said, I'm not getting picky, I'll take it anyway we can get it. But for those of you who like to pray in very specific ways, there you go - simple partial seizures at 9:30 tomorrow morning... I'll keep you posted.
She took a long nap this afternoon, ate a good dinner sitting on the side of her bed, and spent several hours getting more electrodes installed on the surface of her head - the outside part. She still has her catheter in until the morning when they'll take that out - she didn't want to have to get up in the night to go to the bathroom. (I'm sure that was too much information, but that's ok, she hasn't started reading any of my blog posts so I'll be good at least until tomorrow.) The reality is that going into the bathroom with a 15 foot cable coming out of your head isn't the easiest thing to do, so I don't blame her for wanting to go one more night without that hassle.
She's feeling pretty tired so she's already down for the night. Not that I'm trying to get picky but it sure would be nice if she could get a full night's sleep and then start having seizures around 9:30am. Trust me, being woken up out of a dead sleep at 2:30am for a seizure is no fun. They come flying in, whip all the lights on, and start asking all kinds of questions... trust me not fun. It's much nicer (if there is such a thing) to have a seizure in the morning after a good night's sleep. But like I said, I'm not getting picky, I'll take it anyway we can get it. But for those of you who like to pray in very specific ways, there you go - simple partial seizures at 9:30 tomorrow morning... I'll keep you posted.
Let's Get This Party Started
Tina woke up this morning (Thursday) having not slept very well and feeling pretty uncomfortable. True to form we weren't able to settle in until after 1:00am this morning and someone was in pretty much every hour throughout the night for one reason or another. She was feeling pretty nauseated as well through the night most of which was due to the headache she was experiencing. The issue didn't seem to be so much pain due the missing skull but how tightly her head dressing was wrapped. The dressing was causing a lot of pressure which made her head throb. Finally, this morning around 9:00 our nurse was able to badger neurosurgery enough to get them to come up and rewrap her head. She felt the relief almost instantly. Her Nausea has settled and as of right now she's eating her first meal since Tuesday night, and keeping it down... for now. Overall she has improved 100% since this morning - thank you to all who have been praying.
A couple other positive events of the morning included the installation of a PIC line and the removal of all of her IVs. A PIC line, as I understand it, is basically a permanent IV that can just stay in for the rest of Tina's stay. It goes into a main line of the heart and they can both draw blood from it as well as administer medications through it. Tina has very bad veins and, if you followed our trip last time, you'll remember that after a couple of weeks they were no longer able to get an IV into Tina. Finally after having 4 different people "stick" her 15 times unsuccessfully they put a PIC line in. This time, knowing how IV challenged Tina is, we requested that they just put the PIC line in to start with and avoid all of that heart ache (no pun intended). This was a great relief for Tina to know that she wasn't going to have to deal with nurses working for hours at a time trying to change IV locations.
The neurologist just stopped in and told us that as of right now they're discontinuing all of Tina's anti-seizure meds, and the sooner she has a seizure the better. They have seen what they call "inner-ictal" activity on Tina's EEG, which just means that they're seeing some some seizure-like activity and based on that, they feel that if this develops into actual seizures then the grid is definitely in the right place. Good news, but if it's ok with you guys, we're not scheduling our check-out quite yet.
Please continue to pray for seizures and for good data. I'll post more tonight.
A couple other positive events of the morning included the installation of a PIC line and the removal of all of her IVs. A PIC line, as I understand it, is basically a permanent IV that can just stay in for the rest of Tina's stay. It goes into a main line of the heart and they can both draw blood from it as well as administer medications through it. Tina has very bad veins and, if you followed our trip last time, you'll remember that after a couple of weeks they were no longer able to get an IV into Tina. Finally after having 4 different people "stick" her 15 times unsuccessfully they put a PIC line in. This time, knowing how IV challenged Tina is, we requested that they just put the PIC line in to start with and avoid all of that heart ache (no pun intended). This was a great relief for Tina to know that she wasn't going to have to deal with nurses working for hours at a time trying to change IV locations.
The neurologist just stopped in and told us that as of right now they're discontinuing all of Tina's anti-seizure meds, and the sooner she has a seizure the better. They have seen what they call "inner-ictal" activity on Tina's EEG, which just means that they're seeing some some seizure-like activity and based on that, they feel that if this develops into actual seizures then the grid is definitely in the right place. Good news, but if it's ok with you guys, we're not scheduling our check-out quite yet.
Please continue to pray for seizures and for good data. I'll post more tonight.
Wednesday, January 11, 2012
Resting... Sort Of
It's been a long day so far, and it isn't over yet. Sorry that I went so long getting a follow up post out this afternoon. The surgery took a lot longer than I remember it taking last time and I didn't want to freak everyone out by saying they were still going. Sorry if I made some of you nervous.
Tina is now in the EMU and plugged in. Basically what happened in surgery was that they removed a section of her skull (called a bone flap) and put it in the freezer. (They put her name and date on it so that when the weekend cleaning crew comes in it doesn't get thrown out with Frank's left over pizza that's been sitting in there for weeks.) With her skull off, they placed a grid of electrodes right on the surface of her brain. It's a rectangular piece of plastic with a grid of small metal dots every 1/8 inch or so and each dot is connected to a wire lead. Once the grid is secured to her brain they feed the wires out of her head and then sew her scalp back up over the wires. That's pretty much the surgery in a nut shell.
Now that she's in the EMU they hook each of those wire leads up to a computer that can monitor the brain activity coming from the area immediately surrounding the metal dot that it's connected to. This way the hope is that when she has a seizure they're able to see which metal dot shows the first sign of seizure. If they are able to determine that her seizures always begin in the same location, the thinking is that they will remove that part of her brain and - presto- no more seizures. So as odd as this sounds, we need Tina to have seizures in order for them to be able to remove the correct part of her brain, so please pray that she would have seizures... starting tomorrow.
As of right now they still have her on her anti-seizure meds through tomorrow. They're not sure if they will take her off her meds tomorrow morning or tomorrow night, but this is the same routine from the last time we were here. They would rather she not have a seizure immediately after surgery if possible. However, she is hooked up to the computers so if she does have a seizure they should be able to capture it, and since she's on her meds it shouldn't progress into a grand mal, which is always a good thing.
Tina came out of surgery pretty tired as you can imagine, so she's trying to rest but, as anyone who has ever had surgery knows, that's easier said than done. She has every monitor conceivable hooked up and they're always beeping, inflating, deflating, or printing something, not to mention the doctors and nurses coming in every 15 minutes or so to check on her. She also says that her head hurts more this time than she remembered it hurting last time. After they gave her drugs the pain went down considerably, but now she's feeling a bit nauseated. The bottom line is she's trying to rest but not having a ton of luck.
We received a warm welcome into the EMU. We haven't seen anyone we don't know, and I got my fair share of hugs when I walked in this afternoon just before they wheeled Tina in. It is so nice having familiar faces here, and not only that but to have those familiar faces know us personally is so reassuring. In some ways it feels like we never left. Seriously - I took a trip down to the cafeteria about 7:00 and grabbed my diner (and lunch) and brought it back up to the room to eat as I've done a million times, and it felt like I just did this yesterday. Everything from the elevator ride, to walking down the hall with food in my hand, to sitting in the room trying to eat as quietly as I can - it was an odd experience.
It's 8:00 and Tina appears to be sleeping, but that probably won't last. The nursing shift change just happened which means a new set of nurses will be coming in to do their checks(and I imagine a few will be stopping in just to say "hi"). The first night after surgery is always a bit more chaotic than the others, at least that was the case with the last four. It's hard to believe that my wife has had 5 brain surgeries, but hopefully she'll only got one more on the way and that's it. Six is plenty enough to last a lifetime.
Tina is now in the EMU and plugged in. Basically what happened in surgery was that they removed a section of her skull (called a bone flap) and put it in the freezer. (They put her name and date on it so that when the weekend cleaning crew comes in it doesn't get thrown out with Frank's left over pizza that's been sitting in there for weeks.) With her skull off, they placed a grid of electrodes right on the surface of her brain. It's a rectangular piece of plastic with a grid of small metal dots every 1/8 inch or so and each dot is connected to a wire lead. Once the grid is secured to her brain they feed the wires out of her head and then sew her scalp back up over the wires. That's pretty much the surgery in a nut shell.
Now that she's in the EMU they hook each of those wire leads up to a computer that can monitor the brain activity coming from the area immediately surrounding the metal dot that it's connected to. This way the hope is that when she has a seizure they're able to see which metal dot shows the first sign of seizure. If they are able to determine that her seizures always begin in the same location, the thinking is that they will remove that part of her brain and - presto- no more seizures. So as odd as this sounds, we need Tina to have seizures in order for them to be able to remove the correct part of her brain, so please pray that she would have seizures... starting tomorrow.
As of right now they still have her on her anti-seizure meds through tomorrow. They're not sure if they will take her off her meds tomorrow morning or tomorrow night, but this is the same routine from the last time we were here. They would rather she not have a seizure immediately after surgery if possible. However, she is hooked up to the computers so if she does have a seizure they should be able to capture it, and since she's on her meds it shouldn't progress into a grand mal, which is always a good thing.
Tina came out of surgery pretty tired as you can imagine, so she's trying to rest but, as anyone who has ever had surgery knows, that's easier said than done. She has every monitor conceivable hooked up and they're always beeping, inflating, deflating, or printing something, not to mention the doctors and nurses coming in every 15 minutes or so to check on her. She also says that her head hurts more this time than she remembered it hurting last time. After they gave her drugs the pain went down considerably, but now she's feeling a bit nauseated. The bottom line is she's trying to rest but not having a ton of luck.
We received a warm welcome into the EMU. We haven't seen anyone we don't know, and I got my fair share of hugs when I walked in this afternoon just before they wheeled Tina in. It is so nice having familiar faces here, and not only that but to have those familiar faces know us personally is so reassuring. In some ways it feels like we never left. Seriously - I took a trip down to the cafeteria about 7:00 and grabbed my diner (and lunch) and brought it back up to the room to eat as I've done a million times, and it felt like I just did this yesterday. Everything from the elevator ride, to walking down the hall with food in my hand, to sitting in the room trying to eat as quietly as I can - it was an odd experience.
It's 8:00 and Tina appears to be sleeping, but that probably won't last. The nursing shift change just happened which means a new set of nurses will be coming in to do their checks(and I imagine a few will be stopping in just to say "hi"). The first night after surgery is always a bit more chaotic than the others, at least that was the case with the last four. It's hard to believe that my wife has had 5 brain surgeries, but hopefully she'll only got one more on the way and that's it. Six is plenty enough to last a lifetime.
She's Out... Finally
The surgeon just came out and let me know that Tina is out and she's doing good. It took a while longer than I thought, but the surgeon indicated that everything went as planned. He did end up removing some hardware from the previous surgery while he was under the hood so that took some extra time. She'll get a CT scan to make sure the grid of electrodes were placed exactly where they need to be and then she'll head up to the EMU.
I'll post more later.
I'll post more later.
She's In
It's about 9:00am and Tina is back into surgery. We were to the hospital around 6:30, and they took her back to pre-op holding area around 7:30 or so. She has the same anesthesiologist as last time (who claims she remembers us). Even the guy who shaved her head said he remembers us. I had to challenge that one, but he sticks to his story that he first recognized her name and then definitely remembers her face - so I'll give him the benefit of the doubt.
Tina slept well last night and is in great spirits this morning and feeling very confident. She's ready to get this thing going so we can get it over with. It still amazes me how freaked out people look here. We sit in surgical admitting, then the waiting area, then the pre-op holding area and everywhere you look are people who look like they are so afraid. I have no idea what they are there for, nor what they've been through but it never ceases to amaze me that here we are - Tina is going in to have her brain cut out and we're sitting there with smiles on our faces, joking with the doctors and nurses, and just at ease and peaceful.
I can't tell you how grateful we are for the confidence that comes from knowing the One who holds all things in his hand including Tina and the doctors. Nothing happens that he is unaware of and even more he loves us more deeply than we could ever imagine. If that doesn't give you confidence in the midst of difficulty I don't know what does. And it isn't that we are without fear and anxiety, or that we have s sadistic view on difficulty - like we go looking for it - but we are supremely confident that our God loves us and our future is secure. What's the worst that could happen? Sure Tina could die on the OR table, but is that really the worst thing? If she dies she goes home to be with Jesus - sounds pretty good to me. As for me, sure I'll miss her, and there will be significant pain and hurt but the truth is that it's only a matter of time and I'll see her again. So I ask you, in light of that truth, what's to fear?
No, we don't think Tina is going to die or anything even close to that. My point simply is that when your hope and confidence is not based in this world and human efforts you're able to sit in a hospital on the verge of brain surgery, surrounded by all kinds of people who are in deep despair, and have a peace that transcends this world's wisdom and understanding.
Please keep praying. The surgery certainly is under way and she'll be in for several hours. My guess is that she'll be out sometime between 11:00 and noon. I'll post again when she's out.
Tina slept well last night and is in great spirits this morning and feeling very confident. She's ready to get this thing going so we can get it over with. It still amazes me how freaked out people look here. We sit in surgical admitting, then the waiting area, then the pre-op holding area and everywhere you look are people who look like they are so afraid. I have no idea what they are there for, nor what they've been through but it never ceases to amaze me that here we are - Tina is going in to have her brain cut out and we're sitting there with smiles on our faces, joking with the doctors and nurses, and just at ease and peaceful.
I can't tell you how grateful we are for the confidence that comes from knowing the One who holds all things in his hand including Tina and the doctors. Nothing happens that he is unaware of and even more he loves us more deeply than we could ever imagine. If that doesn't give you confidence in the midst of difficulty I don't know what does. And it isn't that we are without fear and anxiety, or that we have s sadistic view on difficulty - like we go looking for it - but we are supremely confident that our God loves us and our future is secure. What's the worst that could happen? Sure Tina could die on the OR table, but is that really the worst thing? If she dies she goes home to be with Jesus - sounds pretty good to me. As for me, sure I'll miss her, and there will be significant pain and hurt but the truth is that it's only a matter of time and I'll see her again. So I ask you, in light of that truth, what's to fear?
No, we don't think Tina is going to die or anything even close to that. My point simply is that when your hope and confidence is not based in this world and human efforts you're able to sit in a hospital on the verge of brain surgery, surrounded by all kinds of people who are in deep despair, and have a peace that transcends this world's wisdom and understanding.
Please keep praying. The surgery certainly is under way and she'll be in for several hours. My guess is that she'll be out sometime between 11:00 and noon. I'll post again when she's out.
Tuesday, January 10, 2012
A Day on the Town
Our day started early. We were up and on the road this morning at 7:30 after enjoying a lovely complimentary breakfast at the hotel consisting of some kind of prefab circular... egg... thing on an english muffin with a slap of meat product that I think was sausage - the Comfort Inn version of an Egg McMuffin no doubt. Unfortunately we only got about half way to the hospital when we realized that we had forgotten Tina's meds despite being reminded that she needed to bring them, so we had to turn around and go back to the hotel to get them. Needless to say we arrived at 8:15 for Tina's 8:00 MRI that we were supposed to arrive at 15 minutes early.
The MRI went well, Tina's anti-seizure meds had kicked in by the time they were feeding her into the machine and she was feeling the customary sleepiness that comes with them (yes even at 8:30 in the morning after a full nights sleep she's ready for a nap). The MRI tech was quite surprised when, after the 50 minute MRI was complete, Tina had fallen asleep and asked if she could be left in for a few more minutes. The tech had never heard that one before. Interestingly enough we talked to the neuro-surgeon's nurse tonight (yes we have her home phone number) and she said that the surgeon was very excited about Tina's MRI. Apparently he's never seen an MRI that was that good - no one can lay that still. Leave it to Tina to out perform the average MRI-Joe by falling asleep in the MRI machine that's so loud that you have to wear earplugs. Tonight the nurse said that the surgeon was so excited this afternoon talking through Tina's surgery tomorrow that he can hardly wait to get to it, and she said, "the surgeon never gets excited." Hope he can get to sleep tonight...
After Tina's MRI she had an appointment with pre-op testing. They did the normal vital checks, read through all of the medical forms, yada, yada, yada.... then sent us up for Tina to get a chest X-ray. The neuro-surgeon's nurse had asked us to call her when we were done with Tina's appointments so she and the surgeon could talk to us. I had called her cell a couple times but didn't get her so we went to the neuro-surgery department and had her paged. She came out and got us and it was like reunion time. We sat and talked for a bit about life and kids, and that kind of stuff then she realized that she had forgotten to grab Tina's chart from the desk. When she went up to get it the people at the reception desk didn't think Tina had a chart because they just assumed we were just "dropping by" from out of town to see her personally. The nurse assured them that in spite of our familiarity Tina was definitely a patient and they were able to dig up her chart.
Eventually we sat down with the surgeon as well and talked through the procedure for tomorrow. It was pretty straight forward, nothing we hadn't done before...at least a few times. He told us that he would be doing the craniotomy (removing the skull) in a different location than before because in the process of going through this the last time they were able to determine that her seizure focus was further back on her brain so they would be placing the grid of electrodes on her brain further back than before.
In the end everyone is very optimistic. The surgeon was almost giddy - and if you ever met the surgeon you'd know that's saying something - but he was pretty optimistic about the possibility that they will be able to pinpoint exactly where Tina's seizures are coming from and that the part of her brain they suspect that location to be is a very safe part of the brain to operate on. What that means is they are very comfortable with removing a larger section of her brain without the risk of adverse effects on Tina. The larger the section they can take out the more likely Tina will be to be seizure free post surgery. That is good news and we are guardedly optimistic.
After meeting with the surgeon we decided to make a pass through the Epilepsy Monitoring Unit (EMU) which is the unit that Tina spent all of her 5+ weeks last time. It was like homecoming. In all there might have been 2 people on today that we didn't know. It only took about 10 seconds in the unit and a party broke out in the hallway. Everyone was excited to see us and they had all heard that we were coming back. In fact they had already been in the process of getting Tina's room all setup for her. Yes it will be the same room we were in last time - Tina wouldn't want it any other way. When we first got there everyone recognized me before they recognized Tina - none of them had ever seen Tina with hair, so I said Tina should have wrapped a towel around her head before hand and then they would have recognized her. It was certainly an answer to prayer that there were so many familiar faces there. We had hoped that the people we had gotten to know so well the last time would still be there, and it really put us at ease when they were. Not only that, but that they were genuinely excited to see us, which is so reassuring to Tina.
By the time we left the EMU it was getting to be early afternoon and Tina wanted to know if I wanted to eat in the hospital cafeteria - not funny. After eating 3 meals a day for 5+ weeks in the hospital cafeteria, never will be too soon to eat there again. Instead we had lunch at Jimmy Johns and then went back to our hotel for a few hours. We decided to go back out and catch dinner and a movie and enjoy some time on the town before Tina's life gets restricted to the same 15 square feet in the EMU for the next who knows how long.
In all it was a good day. Tina is feeling pretty wiped out tonight and was already fast asleep by 9:30. It will be an early morning tomorrow, although not as early for me as it would be if I was doing Men's Fraternity in the morning (sorry Tim, Steve, and Mike). We need to be at the hospital shortly after 6:00 as she'll be the first case of the day. I'm not exactly sure what time she'll go into surgery but, as I've done in the past, I'll throw up a quick blog post letting everyone know when she's gone into surgery and when she's back out.
Once again we would ask that you would pray for God's hand to guide the surgeon (Dr. Miller) and his nurses, and that Tina would recover quickly from the surgery with little pain. However, more than anything else we would ask that you would pray that God's glory would be put on display through us and this situation and that all those involved will know that there is indeed a God in heaven who cares deeply for his creation.
The MRI went well, Tina's anti-seizure meds had kicked in by the time they were feeding her into the machine and she was feeling the customary sleepiness that comes with them (yes even at 8:30 in the morning after a full nights sleep she's ready for a nap). The MRI tech was quite surprised when, after the 50 minute MRI was complete, Tina had fallen asleep and asked if she could be left in for a few more minutes. The tech had never heard that one before. Interestingly enough we talked to the neuro-surgeon's nurse tonight (yes we have her home phone number) and she said that the surgeon was very excited about Tina's MRI. Apparently he's never seen an MRI that was that good - no one can lay that still. Leave it to Tina to out perform the average MRI-Joe by falling asleep in the MRI machine that's so loud that you have to wear earplugs. Tonight the nurse said that the surgeon was so excited this afternoon talking through Tina's surgery tomorrow that he can hardly wait to get to it, and she said, "the surgeon never gets excited." Hope he can get to sleep tonight...
After Tina's MRI she had an appointment with pre-op testing. They did the normal vital checks, read through all of the medical forms, yada, yada, yada.... then sent us up for Tina to get a chest X-ray. The neuro-surgeon's nurse had asked us to call her when we were done with Tina's appointments so she and the surgeon could talk to us. I had called her cell a couple times but didn't get her so we went to the neuro-surgery department and had her paged. She came out and got us and it was like reunion time. We sat and talked for a bit about life and kids, and that kind of stuff then she realized that she had forgotten to grab Tina's chart from the desk. When she went up to get it the people at the reception desk didn't think Tina had a chart because they just assumed we were just "dropping by" from out of town to see her personally. The nurse assured them that in spite of our familiarity Tina was definitely a patient and they were able to dig up her chart.
Eventually we sat down with the surgeon as well and talked through the procedure for tomorrow. It was pretty straight forward, nothing we hadn't done before...at least a few times. He told us that he would be doing the craniotomy (removing the skull) in a different location than before because in the process of going through this the last time they were able to determine that her seizure focus was further back on her brain so they would be placing the grid of electrodes on her brain further back than before.
In the end everyone is very optimistic. The surgeon was almost giddy - and if you ever met the surgeon you'd know that's saying something - but he was pretty optimistic about the possibility that they will be able to pinpoint exactly where Tina's seizures are coming from and that the part of her brain they suspect that location to be is a very safe part of the brain to operate on. What that means is they are very comfortable with removing a larger section of her brain without the risk of adverse effects on Tina. The larger the section they can take out the more likely Tina will be to be seizure free post surgery. That is good news and we are guardedly optimistic.
After meeting with the surgeon we decided to make a pass through the Epilepsy Monitoring Unit (EMU) which is the unit that Tina spent all of her 5+ weeks last time. It was like homecoming. In all there might have been 2 people on today that we didn't know. It only took about 10 seconds in the unit and a party broke out in the hallway. Everyone was excited to see us and they had all heard that we were coming back. In fact they had already been in the process of getting Tina's room all setup for her. Yes it will be the same room we were in last time - Tina wouldn't want it any other way. When we first got there everyone recognized me before they recognized Tina - none of them had ever seen Tina with hair, so I said Tina should have wrapped a towel around her head before hand and then they would have recognized her. It was certainly an answer to prayer that there were so many familiar faces there. We had hoped that the people we had gotten to know so well the last time would still be there, and it really put us at ease when they were. Not only that, but that they were genuinely excited to see us, which is so reassuring to Tina.
By the time we left the EMU it was getting to be early afternoon and Tina wanted to know if I wanted to eat in the hospital cafeteria - not funny. After eating 3 meals a day for 5+ weeks in the hospital cafeteria, never will be too soon to eat there again. Instead we had lunch at Jimmy Johns and then went back to our hotel for a few hours. We decided to go back out and catch dinner and a movie and enjoy some time on the town before Tina's life gets restricted to the same 15 square feet in the EMU for the next who knows how long.
In all it was a good day. Tina is feeling pretty wiped out tonight and was already fast asleep by 9:30. It will be an early morning tomorrow, although not as early for me as it would be if I was doing Men's Fraternity in the morning (sorry Tim, Steve, and Mike). We need to be at the hospital shortly after 6:00 as she'll be the first case of the day. I'm not exactly sure what time she'll go into surgery but, as I've done in the past, I'll throw up a quick blog post letting everyone know when she's gone into surgery and when she's back out.
Once again we would ask that you would pray for God's hand to guide the surgeon (Dr. Miller) and his nurses, and that Tina would recover quickly from the surgery with little pain. However, more than anything else we would ask that you would pray that God's glory would be put on display through us and this situation and that all those involved will know that there is indeed a God in heaven who cares deeply for his creation.
Sunday, January 8, 2012
Here We Go Again
In a lot of ways it seams like just yesterday that we left University Hospitals after spending 5+ weeks in the Epilepsy Monitoring Unit (EMU), yet here we are again getting ready to pack up and make the five hour trip back down to Cleveland to check back in and do it all over again.
Many of you asked if I'd be keeping this blog again this time. It amazed me how many people followed this blog the last time we were there. In fact in the couple of months surrounding our time in the hospital more than 11,500 people read this blog. Now Tina and I don't have anywhere close to that many friends and family so I have no idea who those people were, but what I do know is that many people told me afterward how much God used this blog in their lives. As Tina and I reflect back on our time in Cleveland and recognize that from a medical perspective our stay wasn't very successful, we also recognize that some of the most significant successes in our lives can't be measured on a human scale. We were obedient to God's leading in our lives and although it didn't turn out how we would have liked, and the days, months, and years following have been difficult as a result of unsuccessful treatment, we realize that God used us in significant ways in the lives of many people. The hospital staff, friends, family, coworkers, our own kids, some of you who read this blog, and even in our own marriage, God's goodness was put on display. I believe that in a some small way God was made more famous through this experience even though from a human perspective it was not successful - or as my 13-year-old would say - it was an epic fail.
We have no idea how this trip will go. We don't know if it will result in a successful treatment of Tina's seizures or if it will end the same way it did last time. What we do know is that God holds all the cards, and that he loves us. How much more can I ask for, that the Creator of the universe, the one who through his power sustains the very existence of the universe, also knows my name - he knows me personally - and this blows my mind - he loves me. Really? The all-powerful God of the universe loves me? How could I ever improve on that? Yet, as I am often reminded, although he is all-powerful, and totally loving, at the same time he isn't safe. You see, God's ways are not my ways, and what I see as an "epic fail" God sees as complete success. What I see as too difficult, God sees as blessing me because he is building into my life the character that I need - his paths are beyond tracing out.
The last time I themed this blog after Romans chapter 11 by calling it "untraceable paths." I considered naming it something else this time around, but as I read through Romans 11:33-36 I recognized that we are very much in the same place as we were before. We don't understand all that God is up to in our lives, we do not see where this path is headed - it is untraceable - but we trust him with our very lives and it is our deep desire that through this he would receive the glory forever!
***I don't know if anyone is interested, but I have left all of the blog posts from the last time we were in Cleveland up and they can be accessed through the "archive" section on the left side of the blog.
Many of you asked if I'd be keeping this blog again this time. It amazed me how many people followed this blog the last time we were there. In fact in the couple of months surrounding our time in the hospital more than 11,500 people read this blog. Now Tina and I don't have anywhere close to that many friends and family so I have no idea who those people were, but what I do know is that many people told me afterward how much God used this blog in their lives. As Tina and I reflect back on our time in Cleveland and recognize that from a medical perspective our stay wasn't very successful, we also recognize that some of the most significant successes in our lives can't be measured on a human scale. We were obedient to God's leading in our lives and although it didn't turn out how we would have liked, and the days, months, and years following have been difficult as a result of unsuccessful treatment, we realize that God used us in significant ways in the lives of many people. The hospital staff, friends, family, coworkers, our own kids, some of you who read this blog, and even in our own marriage, God's goodness was put on display. I believe that in a some small way God was made more famous through this experience even though from a human perspective it was not successful - or as my 13-year-old would say - it was an epic fail.
We have no idea how this trip will go. We don't know if it will result in a successful treatment of Tina's seizures or if it will end the same way it did last time. What we do know is that God holds all the cards, and that he loves us. How much more can I ask for, that the Creator of the universe, the one who through his power sustains the very existence of the universe, also knows my name - he knows me personally - and this blows my mind - he loves me. Really? The all-powerful God of the universe loves me? How could I ever improve on that? Yet, as I am often reminded, although he is all-powerful, and totally loving, at the same time he isn't safe. You see, God's ways are not my ways, and what I see as an "epic fail" God sees as complete success. What I see as too difficult, God sees as blessing me because he is building into my life the character that I need - his paths are beyond tracing out.
Oh, the depth of the riches of the wisdom and knowledge of God!
How unsearchable his judgements, 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
The last time I themed this blog after Romans chapter 11 by calling it "untraceable paths." I considered naming it something else this time around, but as I read through Romans 11:33-36 I recognized that we are very much in the same place as we were before. We don't understand all that God is up to in our lives, we do not see where this path is headed - it is untraceable - but we trust him with our very lives and it is our deep desire that through this he would receive the glory forever!
***I don't know if anyone is interested, but I have left all of the blog posts from the last time we were in Cleveland up and they can be accessed through the "archive" section on the left side of the blog.
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