If you want to understand what the Evans family has been through in the past year (Oct. 2008-Feb. 2010) without reading 200 or so postings, this is the posting to read! I have summarized the events here in a single posting…sort of a Cliff’s Notes version of our ordeal with pictures for those of you who are visual learners. One year ago nearly to the day (Feb. 8, 2009) we headed off to Mayo and what would prove to be the most exciting year of our lives!
The Evans Family (front left is Luke 17, Benj 15, me, Elisabeth 11, Jared 4, Karla and Gabbie 7
The “real” Evans family
For those of you who have followed our story over the past year or so please join us in praise to our God for all that He has done! Inserted into this post are the only pictures we have of the nearly two months spent in Rochester.
In a weak moment of frustration just after the initial brain surgery I communicated to Karla that I wanted her to delete all the pictures that she had taken up to this point. I was the one who originally had wanted pictures. I suspect that some of these images will gross some of you out and enthrall others of you…especially those in the medical profession.
The images can be enlarged by moving your cursor over the image and clicking (Actually that’s not true. In order to enlarge these images you will need to see the posting just after this one.) I think they are cool. Come on. Be honest. How many times have you seen a real live picture of your own heart?
The picture of me lying in the bed was taken by Dean Osborne from a cell phone the day of the emergency open heart surgery on Feb. 26th 2009. He deleted the image after sending it to me…a sober reminder from whence I have come.
Now, I share it with you all… to give you all a picture of what the Apostle Paul must have meant in Second Corinthians 12:8ff. when he begged God (3 times!) to take away his “thorn in the flesh.” I doubt they were blood clots.
He wrote: “Three times I pleaded with the Lord about this, that it should leave me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.” If weakness is strength then this image represents a superhero. I share it with you all that you may boast with Karla and I in God and what He has done!
Thanks for standing with us through this past year! Thanks even more for kneeling with us in prayer! Thanks for the countless acts of kindness sent our way!
A Brief synopsis of events:
*October 23, 2008 seizure in the early morning leads to the discovery of a peach sized AVM, a blob of intertwined veins and arteries that has been there since even before my birth (see picture). Neurosurgeon in Des Moines says that I am a “walking time bomb” and that he won’t even consider operating on it. He suggests Iowa City. We called the Mayo Clinic two days later.
* November 11, 2008 Visit to Mayo Clinic where we are faced with a variety of options. 1. Do nothing and live with a 65-80% chance of a potentially debilitating rupture in my lifetime, 2. Staged radiation which is a non-invasive procedure which works well on smaller AVM’s or 3. Undergo a craniotomy (resection) where there would be a 100% certainty that the AVM is gone forever….but also with a 10-15% chance of significant lifelong deficits.
* Early November 2008 began blogging to bear witness to the truth of Romans 8:28 “And we know that for those who love God all things work together for good, for those who are called according to his purpose.”
* Late November 2008 Decide to go with option #3 and surgical resection. This was a decision made by the whole family. We talked honestly with our oldest sons about the risks and possibilities of a poor outcome. We decided to move forward and accept whatever outcome ensued. If Luke and Benj had not been on board with the decision I would not have proceeded with the surgery.
* February 8, 2009 Off to Mayo Clinic for surgery
* February 10th. Admitted to neurological ICU for observation after embolizations on two consecutive days. Embolizations are where pieces of sterilized plastic (and other materials) were inserted into the feeder arteries in my brain via a catheter which originated at the femural artery in my groin area. Doctors blocked off what they said was a huge feeder artery on the first day and several smaller ones on the second day. The embolization after the first artery was blocked off caused a seizure due to pressure changes from slowing the flow of blood to that part of the brain. Later on they told me it was a good thing that I opted for surgical resection as this artery was much larger than they had thought, and said that had it ruptured I very likely would have been toast.
* February 12th Surgery to remove the AVM takes seven hours.
* February 12th-13th Post surgery unable to move my entire right side or speak a word. The thought struck my mind ” What have I just done in allowing a man whom I barely know take an otherwise perfectly healthy man and paralyze him on one side and render him unable to speak?” I also lay there asking myself how it is that a person can speak…and move. As I lay there looking up at visitors I could speak words in my head. I just had no idea how to get them out of my brain into intelligible speech.
Unable to move the right side of my body I couldn’t help but think what a gift it is to be able to move. I found this situation both extremely frustrating and yet fascinating at the same time. After the brain surgery I just laid there and moved my left foot round and round in an endless circular motion. When asked about this, I managed to communicate that the reason I did this was simply because I could. Maybe in the back of my mind I also thought if I moved my left foot my right could learn from it.
I have determined that neurosurgeons have nerves of steel. They have to have nerves of steel to do what they do day in and day out. While they are often able to heal the hopeless they are also capable of changing people’s lives forever. During these sleepless nights I also experienced ICU psychoses where I imagined that the nurses were trying to murder me and I was helpless to defend myself. Let me clarify: I was not dreaming. Rather, I was seeing real people in real time. But the words I heard coming from their mouths were most certainly not the words they were speaking. Just a guess here…but I don’t think most highly skilled Intensive Care nurses moonlight as serial killers. Less skilled ones…perhaps.
I remember watching a tv station that was intended to be relaxing. It was elevator music with graphics…like the old Atari Asteroids game if you can remember that far back. It was not relaxing as I began to see aliens who were coming to traumatize me. Wow! In order to keep my blood pressure low after brain surgery a psychotic drug was used. It was made from slug spit…no kidding. That gives me the willies even to think of it now. Slug spit. Who do you think was the first to find out that slug spit lowered blood pressure in human beings?
* February 14th Spoke for the first time…just a couple of words.
* February 16th Rehab starts in ICU. Moved to regular neuro floor the next day.
* February 18th Temperature spiked to 106 due to blood infection. Back up to ICU floor for 5 more days and nights, three where I lay nearly naked on a cooling blanket in a room that was kept at 58 degrees.
* February 22nd Large blood clot found in lower part of my right leg. A filter was inserted to keep the clot from going to my heart.
* February 24th Moved to inpatient rehabilitation for the first time. Experienced seizures that night. All appeared fine the next day…but I had an inner sense that all was not well.
* Feb. 26th Large seizures at 6 a.m. My heart stopped. I ceased breathing. I coded. Thankfully Karla just happened to be in the room when this happened. They performed CPR on me and also used pressors (Through further research in the past couple of months Karla found that in cases of cardiac arrest where pressors are used roughly 80% end in death). Pressors are a powerful drug used to keep the heart pumping blood (and thus oxygen) to the brain while doctors try to figure out how to keep someone alive. I’m glad they used them on me. A team of doctors eventually determined that I had something in my heart. At first they thought that the filter placed in me four days earlier had dislodged into my heart.
The surgical waiver that Karla signed granted permission for surgeons to remove whatever was in my heart and lungs. After opening me up and cutting a small hole in my heart they pulled out a massive blood clot and 22 others from my lungs (empirical evidence that the filter had not been sufficient). So, two weeks after the brain surgery I was back under the knife for emergency open heart surgery.
There are numerous smiling Providences of God that had they not occurred in exactly the order they had, at precisely the right times as they did, I would not be typing these words right now. Within 30 minutes of discovering the problem I was under the knife. Dr. Sundt, who was the only surgeon on staff who would have been able to perform this surgery just happened to be between surgeries at that exact time.
As I went into surgery my body was literally shutting down. My kidneys were beginning to fail.
* March 3, 2009 Back to inpatient rehabilitation for the second time. That night I finally got some sleep (thanks to Ambien). I was also very, very weak. And very light! I lost 50 pounds of body weight…all my muscle mass was gone. But, some movement was beginning to come back. I could move the big toe on my right foot and there was at least some movement in my right arm, though it would still be a few more days before I would be strong enough to lift my own arm.
I will never forget the moment I was able to do my first “arm curl.” I never imagined how glad I could be just to be able to lift my own arm by my own strength! When I was finally able to bend my right leg a few days after this I was ecstatic! For some reason, even before I had much movement in my legs (all I could do was bend my leg when I was in bed) I could walk. I found great joy in confounding my physical therapists. In fact, as I sit here typing these words just now I’m smiling.
*March 27, 2009 Home on Benj’s birthday after 46 days away from home (Rochester is 4 hours from Earlham). Minor modifications to our home were necessary for me to return. Another bannister was added by a servant-hearted man from our church and it was necessary to have a shower chair as I was still unable to raise my legs enough to step over the edge of our tub. However, after a couple of months all these helps were no longer needed.
* March 28- July 2009 Outpatient rehab at Iowa Methodist Medical Center in Des Moines, 3 times a week. Speech therapy, occupational therapy, and physical therapy. Since Oct. 2008 until the present (Feb. 3,2010) I have only had a driver’s license a total of two months.
* June 2nd-4th 2009 Follow-up visit to Mayo Clinic shows good progress in all areas. Doctors inform me that I must wear a compression sock on my right leg for anywhere from 2 years to life because of the damaged vein in my lower leg due to the blood clots. Simple cat scan reveals that the IVC filter in my abdomen is doing its job of trapping blood clots. Docs take me off Dilantin (an anti-seizure med) but keep me on 1,500 mg of Keppra (also an anti-seizure med). I’m also continuing on blood thinners, which is really just rat poison…seriously.
* Sept. 30- Oct. 2, 2009 Another follow-up visit to Mayo Clinic. After seeing that the IVC filter was not holding back any blood clots doctors suggested removing the filter. I said ok, let’s do it. Then I asked how they planned to retrieve it. They said they would cut into my jugular vein on my neck, stick a catheter with a hook on the end and pull it out. I was not fully sedated when they performed this surgical procedure and could feel the filter coming out as they pulled it up…after first having some difficulty in the retrieval process. They had to make a bigger cut in my neck and use a beefier catheter as the filter was sitting nearly sideways in my vein.
An EEG provided proof that my brain still functions, and more importantly that there was no apparent seizure activity. I wanted to get off anti-seizure meds entirely so Dr. Meyer, because I pushed…or so Karla says anyway, said we could try to get off the Keppra. He said to try cutting the dosage in half. So we did that. But guess what happened 10 days later?
* October 12, 2009 Had another seizure 10 days after adjusting the Keppra (antiseizure medication) downward by half from 1,500 mg/day to 750 mg/ day. I had hoped to get weaned off the anti-seizure meds entirely…but I recognize now that it may be long term…which is better than having seizures. The top two side effects of this medication are irritability and suicidal thoughts; neither of which provide much benefit for my calling in this life to be a pastor. I haven’t had any of the second side effects.
Since doctors never determined where the blood clots came from I am on coumadin (a blood thinner) long term and have to wear a compression sock on my right lower right leg each day. The doctor said 30% of those who wear compression socks need to wear them forever…unless the veins can heal themselves.
My case (I) was presented to students (in a Grand Rounds) by Dr. McBane, the head of Vascular Medicine at Mayo clinic. The hospitals associated with the Mayo Clinic are teaching hospitals and Grand Rounds provides an opportunity for students to be presented with “interesting” cases. We received a copy of the Power Point presentation that Dr. McBane made to his students. He is the Christian doctor who began a quest to better understand the relationship between the sovereignty of God and human suffering.
With tears in his eyes shortly after the first surgery he entered my room (to explain how the filter was supposed to work) and asked “Why would God render a preaching pastor unable to speak and unable to move his right side?” I managed to communicate with a shrug of my shoulders and a few words that I had no idea, but that somehow this was all for God’s glory.
It’s been a wild year to say the least. Looking back there are so many points at which, had God not intervened in the precise orchestration of events, I might….no would not be here today. I’m so thankful to have found out about this oddity within by having a seizure instead of a brain bleed (Eighty percent of people find out they have an AVM through a brain bleed and not a seizure).
Another smiling Providence of God is that Karla just happened to be present at all the most critical moments…like when my heart stopped along with my breathing. Neither do I believe it was a mistake that we “just happened” to be in one of only two medical facilities in the U.S. (or so we were told by Mayo staff) where they were able to perform the cardiac surgery after assessing the nature of the problem.
Neither do I think it was just coincidence that upon entering the hospital on Feb. 10, 2009 I was in the best physical shape I’ve been in for the past 20 years or so. And it was particularly encouraging to have nurse Randy watching over me the first couple of days and nights. Randy was a strong Christian man who had read my Patros Logos (A Father’s Words) articles even up in Rochester. At every step of the way God was with us. It is unmistakable.
So what is life like for us today?
I have regained much of my former self. After a couple hundred hours of rehab including speech, cognitive, physical, and occupational therapies I have gained much back. Physically, I now work out vigorously at the health club three days per week for at least two hours each session. Neurological connections are still coming back. I am aware of this even as I type this sentence. But they are just the finest of the fine motor skills that have yet to return.
I find it difficult to play the piano now which is frustrating…particularly on the right hand where the melody is played. I have to tell my fingers to move and they are getting better at obeying my voice. I never once went to church without wearing a shirt and tie. Do you have any idea how frustrating it is to tie a tie, and button the top button on a shirt with just one good hand?
There were times early on after we had returned home that I spent 45 minutes just getting dressed. I figured that if I took the easy way out even one time it would make it too easy to do it another time..so I have never done it. I have tried to do everything in the rehabilitation process without taking any shortcuts. Some might call it hardheadedness, which I think is the unspoken 10th fruit of the Holy Spirit from Galatians Ch. 5 …at least for someone fighting their way back from nearly nothing.
I preached for the first time, with difficulty, on Easter Sunday, April 23rd, 2009 and then sat out another six weeks before preaching again. Now, as of February 5, 2010, I am back to doing most of the things I had done previously.
My family is still adjusting from this stormy season. Luke, Benj, Elisabeth, Gabbie, and Jared all processed the events of this past year in vastly different ways. Karla has been my constant companion throughout this entire experience. My love for Karla has grown deeper and broader as I have been on the receiving end of so much grace and so much practical help . She has borne the brunt of the agony involved in this whole ordeal. And yes, we still spend hours each week talking about the events of the past year…each time with me walking away from the conversation having learned something new and interesting!
Traumatic experiences are like this I guess. The greater the trauma the longer it takes to shake the almost idolatrous and singular obsession with it…constantly reviewing things over in one’s mind. If you didn’t ask you never would have known (had I not offered it up) that as of today (Feb.5, 2010) I spend roughly 40% of every waking hour thinking about the events of this past year…which is a striking improvement from six months ago when it was probably 75% of every waking hour.
Perhaps by this time next year I can go an entire day without thinking about it. There is so much more to tell which is why I think a book is likely in the making. The “all things” in Romans 8:28 is true. And Psalm 73:25-26 has been a great comfort for me from the day of the first seizure until now: “Whom have I in heaven but you? And there is nothing on earth that I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” Amen!
It’s kind of funny really. I don’t remember having lots of profound thoughts of God during the darkest hours of this trial. Rather, the things I believed about God and physical suffering prior to this past year came to roost on the porch of my life in a big way. I was seldom anxious and felt myself to be in a cocoon of protection…from snowstorms that raged outside to battles that could just have easily raged inside my soul. I felt that my soul took refuge in in the shadow of God’s wings. Psalm 57:1 says “Be merciful to me, O God, be merciful to, for in you my soul takes refuge; in the shadow of your wings I will take refuge, till the storms of destruction pass by.” God was merciful to me. He is merciful to me. My soul did find refuge under His wings. The storm of destruction has passed by. And yet, by the grace of God we are still standing.
Thank you all for your joining with us in our journey! I thank God for all of you who have prayed faithfully for our family (please don’t stop!), shown concern for our family, and helped out in countless ways.
Overflowing with thanks to God for His constant care and you all for your love,