(Karla’s) Real Time Reflections from Five Years Ago #10

The Wailing Wall
The Wailing Wall

(Karla) I’m back to blog on the events of the two days following Mike’s emergency open heart surgery.  Mostly they were days of waiting. Waiting to see if Mike could still move his left side, which had not been affected by the brain surgery (He was still entirely out on his right side).  Waiting for the medication to work that would raise his blood pressure so that he could get out of the cardiac ICU.  Waiting for tests to be done to be sure that everything was as it was supposed to be.

Waiting to see if bacteria grew in the fluid taken from his head wound, which would indicate infection and possibly lead to another surgery.  Waiting for Mike to wake up so I could tell him what had happened.  Waiting for the medication induced amnesia to wear off so that I could quit retelling Mike what had happened!

So what did I do during all of this waiting time?  Good question!  On these days I had a lot of family and friends around, which is a very good thing!  They kept the conversation going so that my mind was occupied.  I am one of those people who is always thinking about and analyzing everything.  At this point, I was wondering what was going to happen next to set us back, and thinking that surely we had finally hit bottom.  I was also wondering how we would have to change the house around to make it ready for Mike to come home.

I was also counting my blessings.  I was so glad that Luke and Benj had come up with my parents.  I was missing my children so much! It really showed me how much they loved their dad.  Those of you with children know that they all have different personalities.  Luke and Benj are pretty much opposites. When Luke was at Mayo the first time, he made it clear that he was not a fan of hospitals.  I get that, as I generally avoid them if at all possible as well.

On the other side of the coin, Benj is not bothered by them at all.  He is at ease when talking to people in the hospital, and does not mind all the gross stuff.  When I called home to tell them what had happened on Thursday morning, I asked to talk to Luke.  I made it clear that if he wanted to come up he could, but if he didn’t want to that was fine, that I would not think less of him or ever hold it against him. The fact that he came showed me how deeply he did care, even if he is not as emotive as some of our other children.

I also went over all the details that needed to be tended to.  I was responsible for so much, both in Rochester and at home.  It is truly a grace of God that nothing major fell through the cracks.  I was just reminded last fall by our band director that I had called and told him that Luke and Benj would not be at the jazz band contest that Saturday.  Luke was the only pianist and Benj was probably the 2nd chair trumpet that year.  It was Mr. Sletten’s first year of teaching and he responded so well!  He was a great encouragement to our family.

This is a paragraph from the evening post on February 27, 1009:

“I apparently did not get the gravity of the situation on Thursday morning.  I know blood clots in the heart and lungs are very dangerous and can be fatal, but I just figured, we know they are there, just remove them.  Dr. Fogleson was almost gleeful to see Mike today and said that he really did not think he would be seeing him today.  We are grateful that God chose to answer all of our prayers in the way we wanted Him to this time.”

I truly thought that it they should just take care of it.  If they couldn’t, who could?  I still attribute it to being in shock, as well as being the peace of God which passes all understanding.  Philippians 4:4-7 says, “Rejoice in the Lord always; again I will say, rejoice.  Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”

This did not hit me until sometime the following summer when I was reading a book by Martyn Lloyd-Jones.  He says that the peace Christians feel in such circumstances is this special gift of God for handling hard situations.  Countless people had made our requests known to God.  Many of our friends had not had peace on the day of heart surgery, but I had.  So I see it that the shock was a gift of God.

On that Friday, Mike also had ultrasounds done of his arms and legs to check for new blood clots.  I have never really talked about what prompted this.  In the previous two weeks in the hospital, I had discovered that it was helpful to Mike for me to touch him when I was talking to him.  So as he came out of the heart surgery I did what I had been doing.  But this time when I rubbed his arm he became visibly upset and said that it hurt.  This was his “good” arm, and was very distressing to me.  I immediately told the nurse, and they ordered the ultrasound.  In the meantime, I asked anyone that went in there to please not touch him as for some reason he was in pain.  Not everyone listened.  So a word to those who are with people in crisis.  Please respect their wishes and do what they ask you to do.  They are the ones who know their loved one best and it is hard enough for them to do what needs to be done without others not heeding what they say.

My only comment from Saturday, is that it was more of the same.  More waiting, more explaining to Mike what had happened, and more coming to realize how close to death Mike had been.  None of the doctors thought he would survive.  That is quite unbelievable at a place like Mayo.

I don’t feel like I have adequately expressed the emotions of these days.  But our friend, Randy Anderson, did in comments he left on the blog.  I don’t normally like to compare myself to the most highly esteemed people in the Bible, but it really felt this bad.  So I’ll leave you with Randy’s words.

Dear Karla,

Reading the blog this past week has been a little like a guided bus tour of Job chapter 1 as relates to Mike’s body.

While he was yet speaking (while she was writing her blog) there came another and said,

Mike has had some small seizures.

While he was yet speaking (while she was writing her blog) there came another and said,

Mike has spiked a high fever — we don’t know why.

While he was yet speaking (while she was writing her blog, there came another and said,

Mike has contracted an infection in his blood we don’t know from where.

While he was yet speaking (while she was writing her blog) there came another and said,

Mike has a blood clot in his leg.

While he was yet speaking (while she was writing her blog) there came another and said,

Mike has coded and is being prepped for heart surgery.

While he was yet speaking (while she was writing her blog) there came another and said,

The heart surgery went well but…..

Karla, my brother passed through these kinds of days with his son 16 years ago now. He was telling Mike about it while we traveled to T4G (Together For the Gospel Conference) this past spring. In the midst of it while standing outside of Children’s hospital screaming at God whether out loud or merely in his mind he doesn’t really remember, he and his wife’s ‘life verse’ — when they were in high school you had to have a ‘life verse’ and so they had one — but it came to him with power.

Proverbs 3:5-6 5 Trust in the LORD with all your heart, and DO NOT LEAN ON YOUR OWN UNDERSTANDING 6 In all your ways acknowledge him, and he will make straight your paths.

My brother heard the Lord say to him through that text– you are so distressed because you are bent on figuring out what all of this is about — well, you can’t, and I told you not to — I told you not to lean on your own understanding — I told you not to try figure it all out. Rather I told you to trust me with all your heart.

Remember this Karla, ‘He did not spare His own Son but delivered Him up for you and for Mike…’

You can trust Him with all your heart and be safe in Him without understanding why any of this is happening.

Shirley and I love you both.

Randy

Mike’s take on those two days:

Karla wrote in part: “…Mike still doesn’t know what happened.  He is not going to believe this one!  I am feeling bad for Dr. Meyer (Mike’s neuro-surgeon).  He came in and just shook his head.  He said that he has never seen anything like this…”

“Dr. Fogleson (the surgical fellow) was almost gleeful to see Mike today and said that he really did not think he would be seeing him today.  We are grateful that God chose to answer all of our prayers in the way we wanted Him to this time. Dr. Fogleson is the doctor we see most often.  If anything happens and he is near, he is there immediately.  We have repeatedly made it clear that many people are praying for him as well when they pray for Mike.  Today he said that he has even prayed for Mike. 

Dr. Meyer commented that if we had taken him home for rehab he wouldn’t have survived.  Then later the nurse said that in any other situation he would have died.  He told us that Dr. Sundt specializes in this kind of surgery and he “just happened” to be on call Thursday.  We all know that he did not just happen to be on call… Dr. Meyer said that he expects this to set him back 2-3 weeks neurologically, so basically back to where he was immediately following AVM surgery…I should probably show a timeline of what happened so that people can see all that God did.  I’ll work on that sometime.  For now, suffice it to say, all of our days are numbered before one of them came to be, and Mike’s days are not up yet.

Mike’s take on those two days:

I really have no vivid memories from the two days following the emergency open heart surgery, just a brief moment as they brought me out of the anesthesia for a neurological check with the ventilator still in. It was creepy.   I would have to say that the amnesia drug they gave me did its job…very well. But even as I was unconscious and very near to death God still managed to micromanage the entire universe. I am also coming to understand and appreciate much more deeply the toll this trial took on Karla as we are “reliving” these days in real time plus five years.

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(Karla’s) Real Time Reflections from Five Years Ago (#9)

Mike and Karla

February 26, 2014 (2009)

This is the ninth in a series of blog postings we are doing in real time plus five years post brain surgery. (click on the colored link to see a summary post Five Year Anniversary ).  Portions of these recollections will be included in the book I am currently in the process of writing. This is the day the music almost died.

(Karla writing)

Here are the posts from this day, five years ago.  If you take the time to read them, please notice how matter of fact and void of emotion they are.

Back to Surgery

Just a brief update.  Mike was up at 6 this morning and had a brief seizure.  This was followed by a longer seizure.  They gave as much ativan as they could and moved him back up to neuro ICU.  Somewhere in that process they discovered that his blood pressure was low and the heart was not working right.  The ultrasound showed blood clots in two parts of his heart and something else in a third.  They think that the filter may have broken loose and that is the unknown item.

I am posting this at about 11 a.m. on February 26th, and they have just taken him into surgery.  If it all goes routinely, it will be 4-6 hours long.  They will remove the clots, the other thing, and fix what they think is a hole in his heart, if need be.  The doctors use words like unstable, critical, and high risk.  Not good.  Our optimistic Dr. Fogleson said that this is an extremely serious situation.

We know that God has this entire situation in His control.  We ask that you would lift Mike and the surgeons up to our God, the father of our Lord Jesus Christ.

Out of Surgery

These next posts will probably be brief and to the point.  You might wonder why I even bother.  One reason is that we have such a great number of people following this, and then praying.  The other reason is that now I just have to wait.  I might as well let others know what’s going on here.  The surgery went very well.  They were able to do everything they wanted to do.  They removed one very large clot and several smaller ones.  The filter is in place, so they do not know where the clots came from.  He had very low blood pressure for four hours, so there are concerns regarding the kidneys from that.

There is also now an issue with the head wound.  It looks infected today for the first time.  The neurosurgeons will aspirate it and may end up going in again and clean it out.  That may happen as soon as the cardiac people allow it.  Dr. Meyer is dumbfounded by all this and said that he has never seen anything like it.  He also commended the cardiac surgeon’s quick work, saying that if it had not been so fast Mike would be dead by now. On the positive side, the swelling in the brain is almost gone and all the blood from the AVM surgery is gone, which explains the great progress he was making in rehab.

He will be on the ventilator for about the next 24 hours.  After that they will wake him up and see how his neurological functioning is.  Between now and then we can just wait and pray.

As I read what I wrote five years ago, my words do not even come close to conveying what I was going through.  If brain surgery day was hard, and blood infection day harder, heart surgery day was off the charts hard and almost unbearable.  One of the things that I repeatedly told myself during this whole ordeal was that there were so many more people who had it worse.  So many more wives and children suffering more than we were.  So many more people in worse condition than Mike was.  Especially at Mayo. On this day, I truly felt that I had it about as bad as anyone in the world at that moment in time.  I didn’t stay in that thought long, but for awhile I was there.

I never really relayed all the events of that day.  Before I go into it all, as you read this, please don’t judge me.  You never know how you will react in a situation until you are in it.  As I have looked back over the past few years, there are some things that I have felt extremely bad, even guilty, about.  I shouldn’t have.  I didn’t do anything wrong.  In retrospect it just looks like rather bizarre behavior to me.

Some background on the events of that day. Mike had wanted me to go home to see the kids the night before because a storm was coming.  I had told him that I would not go home until he could push the button himself to call the nurse.  When you are in rehab, nurses try not to bug you all night long.  Once you are in bed for the night, they do not come in again until 7 in the morning unless you call.  Up to this point, Mike had not been able to push the button.  So when he woke up during the night and asked me to call the nurse because he wanted something for his back pain, I not so nicely said, “If you want me to go home tomorrow, push the button.”  He did, and took a single Tylenol for the back pain.  Yes, a storm was coming for sure!

My initial post said that Mike was up at 6 and had a brief seizure.  It seemed like an eternally long seizure, not brief.  And I don’t really know that it was short.  I know that they gave him 4 doses of ativan, which was all they could give him, so it was probably really quite long and he was basically just knocked out afterward.  Oh, and his heart quit beating and he wasn’t breathing.  I don’t really know if that in and of itself would stop a seizure, but I would think so.  After imploring the nurse to move more quickly, asking whether or not he was breathing, and the crash team coming in after she had called a code, I left.

At this point you may have a few questions.  I know what they are because several people asked me these questions.  “Why did you leave?  How long did they work on Mike before his heart started beating and he could breathe again?  What exactly did they do to him?”

This is where you need to not judge.  I know people who stay in the room when this sort of thing happens.  I know people who do not leave the side of the person who is in the hospital.  I am not that person.  I figured that the ten or so people who were in the room trying to figure out what was going on did not need a hyperventilating wife around.  Hyperventilating wives is not a normal occurrence in the rehab unit.  So once again I had no place to go.  Since every spare person was in my husband’s room, they sent me to the nurses’ break room to calm down.  I eventually came out.

I also have no idea how long they worked on Mike.  I do know that they did CPR and broke ribs in the process.  A couple years after the whole ordeal, we finally asked for more details.  Specifically, the doctors all kept saying, “Well they had to use pressors on you, which is very serious.”  We had no clue what these were.  After the fact we learned that pressors were used to keep Mike’s blood pressure up.  Due to the clots that were in his heart and lungs, he hardly had a blood pressure.  We now know that most doctors would use a couple pressors, and if that didn’t work, the person died.  The critical care doctor working on Mike used 5.  Five is an unheard of number of pressors to use.  Every doctor we saw for several days commented on what amazing work this critical care doctor did.  I don’t even know his name.  He had a South African accent, but I only met him once.  So all I really know is what they did worked, and they quickly moved him back to the neuro ICU to figure out what was going on.

In the midst of all this, I was trying to get ahold of someone to come stay with me.  The friend from Iowa who was there was getting ready and didn’t hear her phone ring.  I finally got ahold of Connie Krueger, who I was staying with, to see if she would come up.  She called Denae Harder, a college acquaintance who became a good friend, and they both came to the hospital, even as the snow was bearing down and Denae’s kids were home from school because of the storm.  I also had the pastor who our Iowa friend was staying with show up, as well as my pastor from my childhood who now lives in Rochester.  So we had small army to gather to hold me up through all this and to pray for my dear husband.

I also made several other phone calls.  To my parents, who said they would leave immediately.  My sister took the older boys in to Des Moines and they came up too.  The husband of the friend who was already up there with me came up, as well as my father-in-law and friends from church.  All in a terrible blizzard.  I was very grateful they all arrived safely!  I also called several friends who told me afterwards that I sounded like I was in shock.  I am sure that I was.  I don’t know how else you get through something like that.  I will say that my calls left many of them very concerned.  One friend who is a doctor could hardly make it through the day, crying out of concern for us.  Our pastor friends talked to doctors in their churches and were told that Mike would likely die.  One friend told me that she was rehearsing in her head what she would say to me when she saw me at Mike’s funeral.  Do those words hit you anywhere close to how they hit me?  Mike’s funeral. I have tears running down my cheeks now.

After I made these phone calls, I went back in to talk to the doctors.  They were all visibly shaken, which is not normal for these doctors even in bad situations.  They still did not know what was going on, and would let me know when they did.  By this time Denae and Connie had arrived and were listening with me.  Always good to have extra ears!  I was also very shaky and weak feeling.  So any guesses as to what I did next?  Again, don’t judge.  Yep, I went to the cafeteria and had breakfast.

My husband is literally dying, and I went to eat.  Who does this?  I can’t remember if someone suggested this to me, but that’s what I did.  And this is what I have felt guilty about for 5 years.  Why would I leave my dying husband for food?  Granted, it took care of the shakiness, but someone could have gotten me food.  I vaguely remember saying that I would go get it myself, but it still seems bizarre to me.  I attribute it to being in shock, and having reached the threshold of intensity that I could handle. So Denae and I went and had breakfast.  We weren’t gone long, and it was enough of a break for me to catch my breath for the next round of stress.

And it began again immediately.  Upon getting back, I found out that the doctors thought surgery was the best option.  There were two surgeons in the country who do the surgery Mike needed, and one of them “just happened” to be at Mayo.  He also “just happened” to be the surgeon on call that day.  And “just happened” to be between surgeries so he could operate on Mike.  Dr. Meyer came in with a surgical fellow that I could barely understand who explained what they planned to do.  He explained the risks involved, that if Mike survived the surgery, which was a big if, he could end up permanently paralyzed on the right side as he currently was, completely paralyzed, or even in a vegetative state.  They did not know how long he had been without oxygen or if the surgery would be successful.  They did know that his kidneys had shut down, which is the first in the order of organs that shut down when there is a lack of oxygen to the body. They needed my permission to do the surgery.  I asked Dr. Meyer what he thought and he said that Mike was young and they should do everything possible.  I then signed the long form without reading a word of it, something I never do.

After they left, I broke down.  I explained to my friends that before the brain surgery, Mike and I had talked about what I was supposed to do in a situation like this.  Well let me tell you, there is no such thing as “A situation like this.”  It is not a black and white issue, which is how I like issues to be.  Mike had told me that if a situation arose that would leave him in a vegetative state, I was not to pursue medical treatment.  I wondered out loud if that is what I had just done.  The pastor, who was the friend of a friend, Randy Charlton, gave excellent counsel.  He told me that Mike had never envisioned this situation and could not have known what he was asking of me.  He told me that Mike’s days were in God’s hands, which is exactly what Mike and I believe, and that it was up to God to take care of it.  If this was the day when Mike’s number of days were complete, God would take care of it.  So I was at peace with the decision that I had just made.  I then asked if I could have a minute with Mike before they took him to surgery.  They said to make it quick.

So I went in and laid hands on my husband and asked God to heal him.  And if he was not to be healed, please take him quickly and painlessly.  And then I left Mike in God’s hands, which is where he was whether I verbalized it or not.  I was very thankful for the small army that sat with me throughout the day and the group that arrived that night.

As you know, since Mike is still alive, the surgery was successful.  Mike is not upset with me for my bizarre behavior, and didn’t even know about till last week.  Once he was settled in his room by late afternoon, I was hungry again, so my parents took us to the Canadian Honker for supper.  Yes, once again, I know where I ate.  My parents, Luke and Benj, my sister Betsy and brother-in-law Brandon, and a friend from Iowa.  We had a brief respite from the stress and then back to the hospital we went.  I will say that it was hard to leave Mike there that night.  He was on a ventilator and looked like he was not alive.  There were two nurses monitoring him all night.  And my parents had gotten a couple hotel rooms across the street from the hospital, so I would be close.  I was able to sleep and be back there first thing the next morning.

I am worn out after writing this.  We have said it before, but it all feels so real to us still.  I remember things as I see them, so I can still see all these events unfolding in my mind.  The pain is different now, because of all we have been through since, but I understand it more.  It has shaped me and is a part of my life.  And now I can cry and move on.  Today Mike and I went out for lunch to celebrate five years of life that looked like it wasn’t going to be.  One of our kids asked why they didn’t get to celebrate too.  So we said we’ll do that this weekend.  I am so thankful that God miraculously spared Mike’s life and that we are where we are today!  I love you, honey!

Mike’s take on that day: An amazing mercy from God and an amazing wife! I love you too honey!

Real Time Reflections from Five Years Ago #8

Mike Evans' blog

DSC_1160 If you have been following these postings for the last couple of weeks you will know that this is the 8th in a series of postings Karla and I are doing in real time plus five years to the day of my having brain surgery ( Five Year Anniversary )  to remove a large   AVM  [arteriovenous malformation] from the left frontal lobe of my brain.

Today’s posting includes the events of Feb. 24th and the 25th, 2009. I have included nearly all of the text from Karla’s postings from those two days.  It was God’s mercy and intricate orchestration of all the upcoming events that are the reasons I am still alive today.

Five years ago today was my first blog entry following the brain surgery and blood infection. As you can see this post included 104 words that took me one hour to dictate with Karla…

View original post 1,410 more words

Real Time Reflections from Five Years Ago #8

DSC_1160If you have been following these postings for the last couple of weeks you will know that this is the 8th in a series of postings Karla and I are doing in real time plus five years to the day of my having brain surgery (Five Year Anniversary)  to remove a large  AVM [arteriovenous malformation] from the left frontal lobe of my brain.

Today’s posting includes the events of Feb. 24th and the 25th, 2009. I have included nearly all of the text from Karla’s postings from those two days.  It was God’s mercy and intricate orchestration of all the upcoming events that are the reasons I am still alive today.

Five years ago today was my first blog entry following the brain surgery and blood infection. As you can see this post included 104 words that took me one hour to dictate with Karla patiently bearing with me. Karla tells me it is ok to let you all in on the truth that those who knew Karla (including me) at this time would not have characterized Karla as a patient person. I really do love my wife!

Mike Speaks: Finally! (February 24, 2009)

Where does one even begin to tell the tale?  Let me start by thanking all of you for your tremendous support, encouragement, prayers and blog comments.  Of course, I am only beginning to read those.  My brain is still somewhat foggy.  After expecting to spend 2 nights in ICU, to have spent 11 sleepless nights there is beyond comprehension.  I am grateful to finally have the surgery and blood infection behind me and be heading off to rehab sometime today.  By the way, it took an hour to dictate this with Karla typing, just so you know how far I still have to go.

Karla’s post from February 24th:

Another Rough Evening  

Just when I think we’ve turned the corner, something else happens.  During physical therapy, Mike started to feel funny, then proceeded to have a seizure.  He was standing at the time, and thankfully the therapists told him to sit down just before the seizure started.  He rested for awhile, and then sat up to eat.  After eating, he wanted to sit in a chair for awhile.  Shortly after he sat up, he had another seizure.  They gave him a shot of ativan, so he slept for quite awhile.  They do not have any reason yet, but it may be the new antibiotic he started this morning.

I usually do not read all that drug information they give, but happened to this morning.  One of the possible, but unlikely, side effects is seizures.  This medication may have lowered his seizure threshold even to allow seizures.  I told the attending, who then told our one of our usual doctors.  He came in and told him that the attending had thought of this.  I told him it was actually me, which got a laugh out of everyone.  He is now back on the previous antibiotic.

They have also started him on a second anti-seizure medication.  Hopefully these two changes will take care of the problem.

 His day is scheduled to start at 7:30.  He is very much looking forward to getting dressed in real clothes!

Mike was initially in a room with another man, as there are no private rooms available.  He had a terrible cough and had the t.v. on all the time and Mike was not able to concentrate on what the various therapies.  We were able to get a different room that currently does not have anyone else in it.  It is to be filled last, but he could end up with a roommate.  I told someone today that we needed to pray for all those people who could possibly end up in here, that their progress would be so good that they would not need rehab!…Off to sleep in the lovely foldout chair they brought me!  This will be a new experience.  You’ll be hearing from me tomorrow.

 Finally! A Decent Night’s Sleep (February 25th)

After all that went on last night, Mike was finally able to get a good night’s sleep.  He went to sleep shortly after 10 and didn’t wake up till it was medicine time.  It looks like we have a reasonable idea as to why the seizures occurred yesterday.  Mike’s dilantin levels were very low, probably due to the antibiotics affecting it somehow.  They have put him on a different medication for seizures and a very high dose of dilantin today.  He has had occupational therapy and is at physical therapy right now, and everything appears to be going well.

 Dr. Meyer was in this morning and was very encouraging.  He said that he goes longer between visits at this point so that he can see improvement, and he definitely did this morning.  This was in spite of Mike having seizures last night, followed by lots of medication.  He was also pleased to see the movement in his arm and leg.  Dr. Meyer is now making comments about ending up with excellent function in both limbs, which is really a strong word from him.  He also said that hopefully Mike will be able to be entirely off seizure medication after a year or so.  Mike was also happy about that. A friend of ours posted the following verse on the blog, and this is what was going through my mind last night.

 James 1:2-6 2 Count it all joy, my brothers, when you meet trials of various kinds, 3 for you know that the testing of your faith produces steadfastness. 4 And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. 5 If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him. 6 But let him ask in faith,

That’s at least part of what this whole ordeal is about, perfecting our faith.  And hopefully the faith of our children and other family members and friends and who knows who else.  So we’ll just keep trying to count it all joy!

Mike’s take on those two days, Feb. 24-25th, 2009:

I remember that it felt very good to finally be in the rehabilitation unit after enduring setbacks and discouragement. I felt weak going into rehabilitation after fighting off the blood infection. I also remember my roommate who had a terrible cough and Karla advocating for me with the nurses that I needed to be able to focus and rest well, none of which would have been possible in that room. She was able to secure another double room just down the hall that was empty. Keep in mind now that if there had been another person needing to enter rehab that day or the next Karla would not have been allowed to stay in the room with me overnight…for the next two nights, which is a crucial component to God’s micro-managing of this entire ordeal. As you will see in tomorrow’s post by Karla the 25th is the last memory I have for a few days. In the rehab units patients are not hooked up to any monitors.

I remember having the two seizures on the 24th of February. I remember thinking to myself “I’m not supposed to have these anymore! That’s what the surgery was for!” I remember going “out” for both of them.  The kind of seizures I had were like an out of body experience. I realized what was occurring but was not fully aware and completely unable to stop. It is the most helpless feeling in the world, next to nurses trying to murder me when I was on the psychotic drug to lower my blood pressure and sleepless nights in the ICU. This led to a phenomenon called ICU psychosis. I think of myself as a fairly stable person psychologically speaking. I assure you that this is a very real phenomenon. I experienced it with great intensity…as real as anything I have ever experienced, or seen, or tasted, or known.

I make this disclaimer about the state of my mental health so that when I share this next memory you will not dismiss me as an outright lunatic. You see, Feb. 24th is also the day I began to experience an overwhelming sense of impending doom. I’m not sure if this began before or after the seizures but I can tell you it was real. I just knew that something awful was going to occur but I didn’t know exactly what or when. I don’t think I shared this with Karla but it was there. And it wouldn’t leave me. I have never experienced this before or since but it was there and rightly so as we will see what happens early tomorrow morning.  My last memory was on the night of the 25th complaining about a pain in my back. The nurse asked if I would like two Tylenol. Karla encouraged me to take two. I said one would be fine. The source of the pain, in retrospect, was not something that could have been helped even by taking two Tylenol.

Karla will be writing the bulk of these next “real time” postings and updates.

Real Time Reflections from Five Years Ago #7

This is the 7th in a series of blog postings from five years ago when our family was going through the massive trial of brain surgery to remove an AVM from my left frontal lobe. Forty six days we spent in Rochester, MN at St. Marys Hospital.  During those traumatic days Karla kept the world updated via these daily blog posts.  Now I give my perspective on those dark days back in February 2009.

Petra in Jordan

I am currently in the process of writing a book about our experiences from exactly five years ago to the day. We are writing in real time plus five years. As you can see these memories are still very fresh in our minds. If you are interested in reading each of these Real Time Reflections from Five Years Ago you can do so by just scrolling through on the home page of my blog.

Sunday Feb. 22, 2009.  Karla wrote:

“I thought I’d better put the date in the tag line, because these days are all starting to run together for us.  Mike will not be at all impressed with what I call each post, but he’s the creative one, not me.

It has been a very busy morning!   When I walked in at 7:45, Mike informed me that as usual, he had not slept.  However, his night nurse had spent time working with him and discovered that when his right leg is bent, he is able to have good resistance against a hand on his foot.

During breakfast, the infectious disease doctor showed up.  I get the feeling that they are very bothered by not knowing where exactly this infection entered Mike’s body.  His temperature is down and he’s improving, which is the important part from the surgeons’ perspective.

We started to watch a John Piper sermon on the computer, only to be interrupted by physical therapy (PT).  Mike never turns down therapy, so we put the sermon on hold!  He is actually starting to get some slight movement in both his hand and leg.  I want to emphasize that this is slight and is not an indication of what the final outcome will be.  We were both very happy about it though!

Immediately after PT left, they started getting Mike ready to transfer him to the regular neuro floor.  This makes both of us a little nervous, but the nurses have been made aware of the problems last time we were here and I feel good that it won’t happen again.

Dr. Fogleson stopped in after the transfer to let us know that the latest round of blood cultures did not grow the bacteria after 48 hours.  This means Mike can get the permanent IV in and not have to get new ones every 3 days.  That will be a relief!  They will also be able to do blood draws out of this line, so the end of being poked is in sight.

The doctor also said that the bacteria is responding to this antibiotic, so unless something changes, we will stick with this. The plan now is to keep Mike on this for 2 weeks and then stop and see what happens. That part is a bit worrisome to Mike. The worst case scenario is that the infection returns. If that happens, they will assume it is in the brain and reopen the site and clean it out. Both surgeons feel quite confident that they won’t have to do this, but it is a possibility. I am thankful that we have chosen to have rehab at Mayo so that the doctors can follow him. Please be praying that the antibiotics will work and that will be the end of the infection…

The song that has been going through my head today is, “You (God) are always good and loving, merciful in all your dealings.”  I have been trying to focus on how God has been good and loving and merciful through this trial.  We’ve probably said these things before, but they bear repeating.

We found the AVM after a seizure, not a hemorrhage that could have led to Mike’s death.  We live close to Mayo Clinic, which is one of the few places in the country that it could have been treated.  We switched insurance last March.  Our previous insurance would not have covered treatment at Mayo Clinic.  Our insurance will cover rehab here as well, for more days than most insurance companies will.  We have many friends and family members who have helped us and walked through the whole ordeal with us.  Mike is in great shape physically, which will make rehab go much better.  Our kids have held up amazingly well, even with Mom and Dad gone for two weeks now, and more time to come.

As you can see, God has been good and loving and merciful to us.  I wait to see what more He does!

On February 23rd Karla wrote:

“We had a friend stay at the hospital last night so that I could go home and sleep.  I arrived this morning to find out Mike is headed for minor surgery today. Yesterday Mike was having severe pain in his right calf.  A priority ultrasound was ordered at 5 p.m.  Unfortunately, emergencies have higher priority, so he did not get in until 10 p.m.  They found a blood clot behind his right knee.  Since he has just had brain surgery, they do not want to use blood thinners.

The vascular guy was just in.  He described the filter that they will put into the vein at the top of his leg.  This will trap any clots that might form and prevent them from progressing to the lungs.  If clots are trapped, there may be some discomfort, but a major problem will have been prevented.

Mike told me to be sure I don’t make a big deal out of this.  Quite honestly, this feels like a finger stick or something equally insignificant compared to what we’ve gone through.

We had a good conversation with the vascular doctor.  He said that he felt so sorry that we had to go through this.  One day all is well, then there’s a seizure and the roller coaster starts.  He asked why God would give a preaching pastor something that takes his speech away.  Mike said that others have worse problems than us and then gave the answer he always does and we know to be true, “Because this is how God can be most glorified.”  He then quoted, “God works all things together for good for those who love Him and are called according to His purposes.”  We also think the speech will be all the way back, so that is not even worrying us a bit.”

Later that same day she wrote in part:

“The procedure to insert the filter in the vein went well. Mike went down for the procedure at 10:45, and was back in the room at 12:15.  He had to lay flat, again, until 2.  Then he ate lunch and started back in on the therapy.  No rest for him today!  He went from occupational to speech to physical therapy.

Therapy has been going very well.  The physical therapist he saw today may be the one he has in rehab.  She was very encouraging and optimistic.  I think that is a requirement for the job.  It has been quite amazing to see him get some movement in his hand and arm. We are anxious to get into rehab tomorrow!  Since insurance limits the days, I am assuming we will have a schedule by Wednesday.  I am planning to go home this weekend and really looking forward to spending some time with our kids!”

Mike’s take on those two days:

After enduring another largely sleepless night in the neuro ICU I was weary yet also somewhat encouraged by finding out during the sleepless night that I was able to have some resistance with my leg. Let me tell you something. To go from nothing to something  is massive! Most of us imagine in our minds things like God creating something (the world and everything in it from no-thing) but to see or feel this occur in real time is remarkable indeed.

The doctors’ concern regarding the blood infection continued to mess with my psychological state of mind.  When Karla writes about the possibility of it being in my brain, and having to reopen the site and says “that part is a bit worrisome to Mike” let me tell you it was much much more than just a bit worrisome.  The way things had gone thus far I had no doubt about the infection returning and having to reopen my skull and clean it out.  The doctors discussed this possibility in my presence and it made me sick to my stomach.

When Karla writes “I am thankful that we have chosen to have rehab at Mayo so that the doctors can follow him. Please be praying that the antibiotics will work and that will be the end of the infection…” I heartily concur! If we had chosen to rehab in Des Moines I would be dead, due to what would follow in a few days. I am so glad that we chose to stay in Rochester to do the rehab and have the original doctors stay with us through the end.

I can also see Dr. McBane, the vascular doctor very clearly, as though he were standing here right at this moment asking, with tears in his eyes why God would give a preaching pastor something that takes his speech away.  I managed to tell the doctor that others have worse problems than us…and then I said more. “I have no idea really other than because this is how God can be most glorified.”  I then quoted Romans 8:28 “God works all things together for good for those who love Him and are called according to His purposes.”  As a Christian himself this brief exchange set Dr. McBane off on a quest to understand more fully the relationship between suffering and the sovereignty of God.

Real Time Reflections from Five Years Ago #6

Evans_0009boostFive years ago at this exact time our family was enduring the greatest trial of our collective lives. The idea came to me on the day after the  Five Year Anniversary of brain surgery (Feb. 12, 2009) to chronicle the events of those days in real time plus five years.

Karla and I will both write over these next 7 plus weeks (corresponding to the number of days we spent in Rochester) in real time plus five years. Five years out things are still very fresh as you will see.

I plan to use some of the text from these real time reflections in the book I am currently writing. This does not mean that I will necessarily be blogging every day but I will be writing every day and I will pass some of that along to all of you.

In those early days after brain surgery and the massive complications that would follow, it was Karla’s daily blog postings that enables me to now tell the story. However, during the days that I was conscious the memories are still vivid.

Real Time Reflections from Five Years Ago #6 Feb. 20-21

On February 20, 2009 Karla wrote:

When I talked to my sister last night, she said the tagline for yesterday’s post (It’s a New Day) was deceptive. She expected an encouraging report and felt duped.  She thought something like Here We Go Again would have been better.  She’s right.  Today is looking up, so we’ll try this tagline again!

It is almost 10 a.m., and so far today we’ve seen the primary doctor, an infectious disease doctor, a doctor from speech pathology to do a long assessment, the head of speech pathology, and the occupational therapist, who also happens to be a Luther grad.  The physical therapist got sent away because someone else beat him here.  Mike also ate breakfast in there somewhere.  Whew!

Mike’s fever went down overnight after he was put on the cooling blanket.  However, it does continue to fluctuate.  We have been told this will probably continue for awhile.  We will not know what the specific bacteria is that is causing the infection for a couple of days.  They also do not know where it came from, which appears to be a bigger issue than I initially thought.

The speech people were encouraging from my perspective, but not Mike’s.  He wants things to go really quickly and they aren’t.  His speech fluctuates with the fever, so at times it is better than others.

We have not been told when we will leave ICU, but I am guessing not until at least tomorrow.  It’s kind of hard to hear everyone else around here talking about leave after a day or two, when we have been here 10 out of the last 11 days.  That’s just me feeling sorry for myself.  I think Mike and I were both overly optimistic in our expectations.  We had hoped to be going home yesterday.

On another note, Gabbie vomited last night at about 4:30 a.m., all over my parent’s new carpet, new bed, and new bedding.  Ugh!  So, my mom had to take the day off to take care of her.  Please pray that none of the other kids get sick.  I feel terrible that my mom is having to deal with this.

Karla’s second posting for the day was as follows:

This will be quick, because snow is coming and I am heading back to the house where I am staying.

The doctor was just in and Mike said, “Greetings, Dr. Folgerstrom.”  That would be great, except his last name is Fogleson!  This guy has a sense of humor and got a kick out of it.

Mike has been much more alert and talking a lot more this afternoon.  His temperature is below 100 now, which is good.  All the fluid that was around the incision wound following has gone away, so they are pretty sure the infection is not from the surgery.

Several people have asked what the name of the bacteria is.  It is not one that is often seen and I couldn’t possibly remember it.  I will ask the doctor to write down the name tomorrow.

Mike had a great physical therapy session today.  They had him sitting up and writing and then standing, assisted, next to the bed.  Apparently the gludious maximus muscle is starting to work, which is a very good thing.

I had better get going.  I plan on getting a good night’s sleep tonight.  Dr. Fogleson said as he left that he is on call all weekend and that he hopes for some good cases this weekend.  He left and returned an few seconds later and said, “That means I want to help people.”  We knew that.  He had a long day of surgery.  That wanting to help people is why we are here!

On February 21, Karla wrote:

I finally made it to the hospital at 10 this morning.  I managed 9 hours of sleep!  Mike had told me to take the day off, but I declined.  I woke up to a blanket of snow, but the roads weren’t too bad.

Mike is doing fine this morning.  There is really not much new happening.  His temperature is not normal yet, so I am hoping that they keep him in the ICU until that is under control.  We found out yesterday that he can move directly from ICU to rehab, so that is what I am hoping for.

Right now Mike is quite bored.  The therapy people will hopefully be in today, but it is not a sure thing on Saturday.  Therapy takes a lot of time and wears him out.  Maybe he’ll be up to reading some blog comments today!

My sister came down for the day and we are going to look for clothes to wear in rehab.  He brought mostly jeans and pullover shirts, which is not the right clothing for rehab.  So, it will be interesting to see what we come up with.

Dean, from our church, is heading home today.  He asked Mike if he there was any message to relay to the church.  Mike said, “Tell them God’s word is true.  All of it.”  That’s a good word for the day.

Mike’s take on those two days:

These two days stand out in my mind because of the come and go nature of the fever from the blood infection I was fighting at the time. Just when I thought I had it licked it the fever would return. Those were three dark days indeed. Karla never wrote down the long name of the bacteria that was determined to have been in my bloodstream, but it was consistent with what would be found in the colon. This was the first time that I heard of the possibility of reopening the incision in my skull and cleaning out the site. That freaked me out big time. Even the possibility that they might have to reopen the site, and remove the pieces of my skull once again was almost too much for me to fathom. It was on my mind constantly.

At the time I had not noticed that my ability to talk would come and go in direct proportion to my fever. High fever little speech. Lower fever much more talkative. It was also very discouraging to realize that we had originally been told we would probably be going home by this time, when I wasn’t even out of the neurological ICU yet!

I also remember greeting Dr. Fogelson that morning by mispronouncing his name. This was just one of the many problems I had with word finding in those early days after the surgery. It came out funny but I had not even intended to be funny…for once. It was extremely frustrating to me. Plus, I was in no joking mood with the possibility out there of opening my skull once again and treating the infection directly. But this fear was nothing compared to what I should have feared in retrospect as we will see just five days from now on February 26th, 2009 when my life nearly came to an end.

(Karla’s) Real Time Reflections from Five Years Ago #5

This is one in a series of blog postings that we are doing in real time plus five years to the day of going through brain surgery. As you will see the memories are still fresh and vivid. If you are interested in seeing a summary post and pictures from five years out just click on the colored link,  Five Year Anniversary of Brain Surgery.

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I am currently in the process of writing a book detailing our experiences and thoughts over these past five years. I have asked Karla to write a post today giving her recollections from Feb. 18-19th, 2009.

Mike has been wanting me to write one of these blog posts, and I guess today is the day.  The other night I read through all of the blog postings from when Mike was in the hospital 5 years ago.  I was surprised at the emotional response that I had to many of them.  The past 15 months have been difficult for my family, and often very painful for me personally.  As I re-read the blog from 5 years ago, I am reminded of how much has changed in the past 5 years.  I also recalled many details that were not recorded in the blog, which, by the way, is the only written account of the events during that time. Some of the details are not recorded out of my desire to show great respect for my husband.  Some are to protect myself.  And some are just not there because they were too painful to post at the time.  So today, I hope to add to the details of this date, five years ago.

I posted on the blog in the morning on February 18, 2009.  This was following the first night that I had spent in the hospital during Mike’s time there.  I was uneasy leaving Mike there by himself.  Call it whatever you want, discernment, premonition, whatever.  I just was not comfortable leaving him there alone.  I had taken Jared and Benj back to the Krueger’s house in a bad snowstorm, and turned immediately around to go back to the hospital.  Turns out it was a good idea to take them to the house and a good idea for me to come back!

Mike was very out of sorts on the morning of the 18th.  He had been running a slight fever, not slept well, and had a terrible cough.  So they were running tests to rule out any of the bad stuff that can happen after brain surgery.  The last paragraph of the post says,

“For today, I am holding onto the fact that God is holding onto us.  He will not let us go, regardless of how our lives look.  God has used many scriptures and people to encourage us, so we’ll keep going for another day.”

I am really not a fan of some of my comments as I look back at them!  I probably should have done so more in the midst of our time there.  Shortly after this was written, God holding onto us felt more like we were a yo-yo being hurled up and down.

As was often the case, Mike ate lunch and then I would go eat lunch.  That day Kathleen Osborne was there and wanted to take me out for lunch at Olive Garden.  Yes, I know where I went to lunch on February 18, 2009.  I can tell you lots of other places I ate and with whom I ate during this time.  My brain has lots of useless information in it!  And then I would go back to Mike’s room and not tell him where or what I had eaten so as not to make him feel bad about what he had to eat.

After we got back, Mike said that he felt warm.  They took his temperature and it was slightly elevated but not too much.  Mike did not feel well, so Kathleen and I were sitting there chatting when Kathleen suddenly said that it looked like he was having a seizure.  His head was turning to the right and his arm was lifting up.  I pushed that call button and immediately ran out to find a nurse.  No one ever seemed to move fast enough in these emergency situations to make me happy!  It seemed like a long time, but I am guessing that it was just minutes before a nurse came in and started the ativan to bring a quick end to the seizure.

So what do I do in such circumstances?  Leave the room.  I know that I think I know more about what is going on than I really do, so it is best for me to just leave.  In this particular instance I went in the hallway and started hyperventilating.  On the ICU floors there are a lot of rooms to go in where family members can discretely have a meltdown.  Not so on a regular floor.  So a kind older gentleman saw me and found me a chair to sit in so that I would not pass out.  I also remember him getting a bag to breathe into.  He then went and asked the neurosurgeon who was in his son’s room to please check on my husband.  This was not our surgeon, but another one.  He then found the one room on the floor where I could hyperventilate in privacy.  He and his wife are a dear couple who we still hear from every Christmas.

By the time Dr. Meyer and Dr. Fogleson arrived, things had settled down and they were preparing to move Mike back to the neuro ICU.  He had spiked a fever of 105 which is what caused the seizure.  They did not know what caused the fever.  Since he had recently had brain surgery, Tylenol was the only medication allowed to bring down the fever.  It did not work well and only so much can be given in a 24-hour period.

So the only other option available to bring down fever was to put Mike in a bed with only a sheet to cover him and a cooling blanket beneath him and ice packs on top in a room set at about 55 degrees.  I kept my coat on whenever I was in the room.  I wish that I were better at describing what this was like.  It was cold.  Despair hung in the air. It was lonely, even with people who genuinely cared for us around. The doctors mentioned how it was a balancing act to try to figure out how far they could push the treatment limits considering Mike was only 6 days post-brain surgery.  The previous 6 days had felt hard, but this was brutal.

In one of the moments when I was not in with Mike, I called my parents and asked them to please come up and get Benj and Jared.  We had hoped it would be encouraging to have them around, and at times it was, but it was too much.  Mike had to be my only focus, and I think Jared just felt ignored.  My parents said that they would be up the next afternoon to get them.

Once Mike was settled in for the night, I left to go back to the Krueger’s house.  I don’t know where I ate that night.  Chipotle is a good guess, since it was right off the road to their house, fast, and I could take a few minutes to decompress before heading back.  Ray and Connie were always so encouraging, no matter what had happened during the day!  Connie always had some angel food cake.  They would listen to me, cry with me, speak words of truth from the Bible.  God greatly used them to keep me going during such days.

And that night I made a phone call.  Before we left for Mayo I had set up a group of friends who I could call when I needed, and whose calls I would answer if they called me.  That night I called the Andersons.  When Randy answered the phone, I said, ‘Hi Randy.  This is Karla.”  I must have sounded bad, or may even have been crying.  Before I could say anything else he said, “I’ll get Shirley.”

When my dear friend got on, I told her that I had actually called to talk to Randy that time.  When Randy got back on the phone I told him that I needed a pastor tonight. It was a very dark night of the soul for me.  I asked him if we had made the wrong decision, or not accurately discerned God’s will.  He told me that we had done what needed to be done.  That this complication was not God’s punishment for our error.  That Mike and I had faithfully sought God in this and we were right to have the surgery.  He agreed that it was hard to understand why we were going through all this.  I am sure he had other words of comfort as well, because he is really good at that!  And I assume he prayed with me but don’t really remember.  Then I went to bed so that I could be up early for whatever the 19th would hold.

I am crying as I write this even now.  The memories are so vivid that I can see these events unfolding in my mind.  I now know the effect they would have on our lives.  Mike’s life, my life, our children’s lives, the lives of our friends, the life of our church.  The pain is still there, but God is now bringing beauty out of ashes.  He is bringing us healing and restoration as we could never had expected.  He is giving us far more than we have asked or imagined. Only a great God could do such a thing!  And thus ends what I now (not) fondly call Blood Infection Day.

Karla

Here is one of Karla’s posts from February 19, 2009:

“I arrived this morning at 6:10 to find Mike with another fever pushing 105, so I think we’re in for another long day.

I beat the doctor by 5 minutes, so I probably got maximum sleep.  They cannot figure out what the fever is from yet.  They are bringing in the infectious disease doctors today.  Obviously it is better to know what we’re dealing with than not, so please pray to that end.

He is still on the cooling blanket that he has been on since they put him back in ICU.  I am thinking this is the same thing that was used on our neighbors’ newborn daughter to preserve her life.  So, in spite of everything today, I have been thanking God for the technology and thinking of little Amanda next door.

As I was driving into Rochester, I was listening to  the Come Weary Saints CD.  I wrote about it a couple weeks ago, when we were still at home.  I decided that the Sovereign Grace people need to do another one called Come Even Wearier Saints.  I thought I was weary a couple weeks ago.  I wasn’t.  I hope it doesn’t get any wearier than this!

I also called a friend last night and told him that I needed a pastor.  He was very pastoral and told me that as hard as this all is, we didn’t make the wrong decision.  I needed to hear that last night. 

My parents were at a basketball game and ran into someone they casually know.  His father had a stroke at age 44, which is exactly how old Mike is.  They discovered it was caused by an AVM.  He died a couple of years later.  He told my parents that he thought it was a good thing Mike had the surgery.  This is from a son, which is really why we did this, so that our kids will have a dad for many more years. 

Just another way God is good.  When I am starting to question what we have done, He sends both spiritual and practical confirmation that all is well, from His perspective.  Hopefully by tonight it will be better from ours!”

 Mike’s take on that day:

As I think back to those two days (Feb. 18-19th) some of is still very vivid to me as well. I remember as through a fog dimly having the seizure that sent me back up to the ICU, but the days on the cooling blanket lying naked in a room kept at 55 degrees are still fresh. Remember now that there was a metronome (tick-tock) sound ringing in my head non-stop which only later did we find out it was the titanium plates shifting into place. Add to that the trauma still fresh in my mind from the blood pressure medicine which had me believing that aliens were coming to get me and nurses were trying to kill me and you have a recipe for crazy.

Karla tells me that this was the day that I told her to delete all the pictures she had taken to document our adventures…which she did. I had asked her previously to take pictures at every stage of the process. But by this time I was scared and paranoid of what might happen next. At every turn there seemed to be another complication, this time a blood infection which in retrospect we understand just how serious this could have been with nearly 30% of people who get them eventually dying from them. This was no longer a “cool thing” to show how strong my faith could be in a fiery trial. All the sudden it became a fight for my very life. I remember lying there in that cold dark room with my fever fluctuating. I specifically remember a time when I thought the fever was gone for good and a wave of hope flooding over me, only to have it come back again. More fear and despair. What next I thought to myself? Ironically, what was probably occurring during those days lying motionless on a cooling blanket (development of blood clots) would prove to be the answer to that question.

Mike