Saturday, December 31, 2011
"It's going to HURT! I don't want to do it! I want to go home!"
Perhaps somewhat inappropriately, I smiled as I looked down at Spike and said "Quiet down buddy. It's just a blood test."
Spike went through countless blood tests, IV insertions, surgeries, healing, poking and prodding with nary a complaint and now he was screaming about a simple blood draw? Yet another happy sign of normalcy as far as I was concerned.
Go ahead Spike, scream your head off. It's NORMAL for a four year old to hate blood tests!
We were in for a follow up visit with his wonderful Duke neurologist. As Spike and I entered the examining room, the nurse told him that she was going to take his blood pressure. Spike cheerfully declined, saying, "You don't need to check my blood pressure anymore. I am a healthy boy now!" His blood pressure was, of course, normal.
Medically, things could not be better. Although he is not out of the woods yet, every day that passes without any seizures further reduces the chances of them returning ever again.
In three or six months he will have his first post-operative EEG. Waiting for those results will be stressful as any abnormalities could point to potential trouble. Or not. The problem, diagnostically, is that a normal EEG does not indicate that he is cured and an abnormal one does not indicate the seizures will return. Epilepsy is a devious monster that will always lurk in the background but may never show its face again. In fact, at this point, Spike is probably beyond the 50% likelihood of recurrence point - on the good side of 50% for once. Consider that as late as November 8, the chance of him having a seizure in the NEXT HOUR was far greater than 50%!
The doctor did tell us that the longer we keep Spike on anti-epileptic drugs, the lower will be the likelihood of seizures recurring. As I have been vocally anti- anti-epileptic drugs for quite awhile as they were not helping Spike and they were certainly having adverse effects, the doctor took great care in explaining why they keep patients on them so long.
1. The surgery itself may create conditions conducive to seizures regardless of any cure of the original ailments.
2. Some patients who are weaned off of the drugs too early after experiencing no post-operative seizures may suddenly develop seizures that do not respond to any medication OR surgery.
3. There's a lot we still don't understand about epilepsy and the drugs may provide some insurance if the side effects are acceptable.
Well, sign me up for a lifetime supply of drugs then! I will do whatever is necessary to reduce the chance of new seizures.
Of course, I knew this was coming so I was insistent (pushy, demanding, over-bearing) about getting him on an acceptable mix of drugs BEFORE the surgery. The hyperactivity side effects that he experienced from some of the drugs would NOT have been acceptable for a year or longer after surgery. Now he is perhaps a bit happier (in a very slightly drunk sense - not impaired at all, just overly happy) and a bit more hyperactive than he would be without the drugs but the happiness tends to offset the hyperactivity and renders it mostly harmless. In fact, never having raised a little boy, I have no idea what normal is for his age. What's important is that his current condition is more than acceptable forever as far as I am concerned.
The doctor also provided a clear explanation of the pathology results that confirmed my amateur understanding of the report. The malformation in the excised tissue was congenital, meaning that it was present before birth. Something happened long ago in the initial development of that part of his brain that just wasn't going to be fixed or go away on its own. It had to be taken out. Thankfully, we live in a time when that is possible.
Of course, for many children, such solutions simply do not exist. As I was making a follow-up appointment, a family came up with a young boy in a wheelchair along with a seizure dog. The boy smiled at me and I nearly cried. He was alert and aware but obviously crippled by some neurological condition. I'm sure he was there to see the same doctor we had just left and would receive the same quality care that helped Spike. Nonetheless, some random string of events occurring probably before birth left this child with fewer good options. I think about that a lot because I fully expected to be wheeling Spike around myself given how his condition deteriorated throughout the year. My heart goes out to all the kids and families who deal with severe medical issues. I had to take care of my own kid this year. I hope someday I find a way, I hope many of us find a way, to help others in the future.
Spike enjoyed a great Christmas. I'm not real big on Christmas traditions but he has somehow picked up the finer points of the holiday season. He insisted on outdoor lights and he even dragged me out to get a wreath for the door because he said, "You just have to do that at Christmas!"
For the first time, Spike was not the least bit cautious around Santa. In fact, he didn't bother waiting in line. He just marched right up and started reciting his well thought out list of gift requests. Of course, he can blame his lack of inhibition (manners?) on the phenobarbital. Santa understands. I sure hope the poor little girl who was on Santa's lap at the time got her requests in!
We have enjoyed glorious weather the past couple of weeks in North Carolina and Spike and I head out to the woods or water every day. For some reason, he objects to going out every time but I insist and then he has a great time. He runs, kicks pine cones, throws sticks, digs in the dirt, wanders into the undergrowth and basically makes a nuisance of himself. All blissfully normal behavior for a four year old boy.
Yesterday I took him out to the dam at Jordan Lake (the prettiest setting in all of central North Carolina) for some free range running with a playground nearby in case he showed interest. The first thing we did was climb a steep hill to the lookout platform. I run every day and yet I was getting winded about halfway up. He stopped, wiped his brow dramatically and said, "Phew! What a climb!" He then SPRINTED to the top, leaving me in the dust. That's a remarkable recovery less than two months after such major surgery.
For the first time, he also showed real interest in the playground and climbed around for awhile before running off down a newly discovered trail through the trees. His strength may lag his age peers a bit but he is rapidly making up for a lost year of real physical activity. His coordination is also as good as ever.
Even though Spike continues to object before going out every day, I have to drag him home out of the woods as the sun goes down. He pretends to lock himself to park gates and trees and then always blocks my way as a last effort to stay outside just a little longer. He generally wins these battles as I cannot imagine better physical and emotional therapy than being outside on yet another father/son adventure.
On January 2, 2011, Spike suffered his first seizure. That one was the worst by far and still gives me nightmares. As I watched him and grabbed for my phone to call the paramedics, I wasn't sure he was going to survive long enough to get to the hospital. When he came out of it and I raced him to the emergency room faster than the paramedics would have been able to, horrible thoughts crowded my mind about what this all meant. The reality that developed was far worse than all of those thoughts combined. Several times during the year, I was sure we were going to lose him but he just kept fighting back. 3,000 seizures later, Spike has apparently beaten the monster with the help of all the medical professionals on his team.
2011 will probably always represent Spike's worst year. Right now, it also represents his best but I just know he has even better ones ahead - starting tomorrow.
Saturday, December 10, 2011
Yesterday, I took him to the park once again to enjoy some fresh air.
The kid in the park yesterday is NOT the same one that I helped wheel into the operating room.
The New Spike is not only seizure free after a month, he is a bundle of joyous energy. He is happy all the time and he just can't get enough of everything he encounters.
I figured we would walk a mile through the forest. After three miles, he was ready to do it all again - and he didn't walk, he ran. As I kept up a steady pace, he stopped to look at everything and roll around in the duff. Then he would pick himself up, run past me and do it again. Big hills, slippery paths, tricky tree roots - nothing stopped him and the whole time he chattered away happily, making up stories and asking a million questions. Not the same kid at all.
After seeing the hills and the condition of the trail, I decided to sit out my race today. I figured I had gotten enough exercise with him and it would be nice to sleep in for once on a Saturday. My feet hurt too. And my knees. And I had a paper cut on my thumb. And I'm sure I had other excuses too.
Having made the irrevocable decision to skip the race, I found myself at the starting line this morning at 9:00. If Spike can handle the course after all he has been through, I figured none of my excuses were valid. Ran my best race yet, with my fastest time. Fastest, not fast. After a day of rest and ibuprofen, Spike and I will head out to the Cary Soccer Park to walk next week's course. Soon, he'll be running with me.
Wednesday, December 7, 2011
While Spike continues to show no interest in leaving the house, once I actually get him outside, he has a great time. While his physical therapy seems to be working well, he remains hesitant about climbing in the playground. I think that has more to do with nervousness about other kids flying around than it does with his own abilities. He justifiably remains tentative about his balance and strength. Worrying about someone suddenly running past him while he crosses a swinging bridge or pushing him aside as he gets ready to go down a slide takes the fun out of the playground. So when I get him to a park now he immediately wants to walk through the woods - which is just fine with Dad!
On Sunday, I took him to Bond Park in Cary. Aside from getting him outside, I wanted to walk a bit of the course that I will race next weekend. I knew that we wouldn't be able to walk the whole three miles but figured I would at least get a sense for the course. As it turns out, it's going to take more than three miles to tire out the new Spike! While we didn't walk the course, we did spend more than two hours walking everywhere else. Up and down hills, across the dam, through the woods, along the docks - we did it all and he left asking for more as the sun began to set. That's when I realized that Spike has once again become what we've all wanted all along - a normal kid.
Now that Spike has returned to this blissful state of normality, continuing his blog would be the self-indulgent crowing of a proud papa. Which, of course, doesn't mean I won't do that! However, I have decided to cut back on the frequency of updates so as not to bore everyone with the minutiae of the daily life of a four year old and to give myself more time for other writing.
I originally started this blog with the sole intent of updating my family on Spike's medical issues. So much was going on with him that I had little time or energy to update everyone individually with e-mails and phone calls so I figured that posting a quick update once a day was simply efficient. The blog turned into so much more. For one thing, the audience quickly expanded far beyond my family to include several hundred people scattered all around the world. These ramblings have now been viewed over 10,000 times by people who care deeply about Spike even though they might never meet him. The e-mails I receive continue to brighten every day for me. From my selfish point of view, the blog gave me a refuge from the hospital during those most stressful times. Even if I was writing while sitting next to Spike's bed in the ICU, I could escape, mentally and emotionally, while remaining present physically to handle whatever might come up. Most importantly, I felt the caring and support from everyone who followed Spike. That helped more than you can know. As I have said before, no matter how strong and independent you think you are, if you find yourself overwhelmed by a crisis and someone offers help and support - TAKE IT. Thank you all for the many ways you have helped me, sometimes by simply being out there and listening.
I will post updates at Christmas, on Spike's birthday in February and whenever he reaches major milestones in his recovery. If there are major setbacks, which there won't be, you will hear about it here.
Enough words! I will give you something far better now. A little walk through the park with Spike.
Who wouldn't want to take a walk with a normal little four year old?
Of course, "normal" can mean just about anything at that age. A nice quiet walk in the woods, watching deer and picking up sticks can quickly devolve into an air guitar solo from Rock Star Spike!
Once he hears that beat in his head, can you blame him for breaking out in dance?
It's all fun and games until he threatens the paparazzi with stick. For people who crave the spotlight, rock stars can be so unreasonable when fans want a photo.
Only one thing to do then - tie them to a post until they clean up their act. Spike blamed his violence on the drugs. Yeah, they all do that.
Just when you think you've rehabilitated the criminal, you find him carrying a weapon! The shadows do not lie - look at that right hand!
Yes, he's a little devil and here's the proof.
But that music in his head will just not be silenced.
This time he locked himself to the post and claimed he lost his "arm key" so we couldn't leave the park.
He then decided that being in the park was a vital part of his physical therapy regimen. Hard to argue with that so we stayed a little longer.
Thank you all for walking with us through Spike's entire journey. Now that his medical adventure is over, it's time for him to walk into his future, under his own power thanks to the skilled hands of a surgeon, with the support and love that all of you have shown.
Friday, December 2, 2011
Yes, he actually put his iPad down, went a got a book and asked me to read to him. That's a big change for him as he just has not had the attention span for books in the past year.
A couple months ago I had gotten him some very nice books by Sara Varon. They are long stories told all in pictures. I thought he might like that better than wordy books. Anything to get books back in his life. He enjoyed them at the time but today said he wanted me to read a real book with words. I've been reading to him at bedtime but this is definitely the first time he has gotten a book on his own initiative in the middle of the day. Progress, slow but steady.
Unfortunately, Spike has not been progressing as well with his various fears. He is scared of heights, elevators, loud noises and who knows what else. These are all new or re-emerging fears since his hospitalization. of course, it is hard to associate them with his illness versus his being a four year old. In fact, as I was talking to him today about them, I explained that when I was a kid I was afraid of heights, escalators and, most of all, boats, especially sailboats! That sort of argues against it being illness related.
I told Spike that I overcame my fears by just going out and doing things to show myself there was nothing to be afraid of. I am obviously no longer afraid of sailboats but I AM afraid of the cost and time commitment required for my sailboat addiction! Not sure that's a good trade-off.
Spike asked if I was still afraid of anything. I told him I don't much like heights but the only thing I could think of that I was actually afraid of is snakes. To prove that he had been listening to me, he promptly grabbed a stuffed snake and stuck it in my face to help me get over the fear. Didn't work.
I spent four days working in Chicago this week. It is getting harder and harder to be away from him. Guess I'll have to bring him along. He should enjoy the long elevator ride to the 41st floor and the floor to ceiling windows looking down on the noisy construction site. Er, maybe I should hold off a bit on that trip.
Sunday, November 27, 2011
By the time we got together, Spike had already had a full day with a long walk through the woods and some time at the playground. I thought he would be tired but he was full of energy. At the same time, he was a little hesitant, almost afraid of certain things. Going up in a glass backed elevator and walking along a balcony really seemed to scare him.
The weather was once again perfect so we decided to take the boat out. Spike held on very tightly as I led him down the long, narrow dock. He had never been on the new boat and certainly never walked on a rickety, long dock before so I worried a bit about his stability and fear. While he was certainly concerned, he was also determined to go on the boat because he knows boats are the source of most of my adventures.
Once he got settled in the cabin, he seemed comfortable but still a little uncertain of everything so I went very slowly to a nearby cove that I knew would be very still. I put the anchor down in two feet of water and suddenly Spike was excited and happy. He even asked to go outside the cabin so he could look around. Any traces of fear seemed blown away by the breeze. That made me incredibly happy because, just as I did with Emily for years, I really want to take Spike on some cool boat trips.
We really didn't want to leave as the weather and scenery were perfect but the sun sets quickly this time of year so we headed back after a great 30 minutes at anchor. Spike seemed much more confident walking back along the dock to the car (still holding my hand and wearing a life jacket of course). When we got back to my parents' hotel he again hesitated a bit at the elevator and the open balcony.
That's when it hit me. I was concerned about how his illness, medications and general coordination might be affecting his comfort level. Perhaps I should have focused more on genetics. When I was his age (and for many years as I grew up), I was absolutely terrified of heights, unsteady movement and boats. Even when I got out of college, I had a problem going up in tall buildings or flying. A big part of the reason I started sailing was to overcome these fears and it has, mostly, worked. To this day, I shake whenever I get up on a ladder to change a light bulb. So maybe Spike is actually doing better than I should expect when it comes to these things. He certainly seemed comfortable at the end of our little cruise. Even more important, he is exuberant whenever he gets outside and actually does something. It's great to see him smile and laugh at everything.
A little time afloat with grandma and grandpa was the perfect ending to the best Thanksgiving weekend I've ever had.
Friday, November 25, 2011
Once we arrived at the playground, Spike tried out all of his regular playground moves. He could climb and slide but just didn't seem comfortable or confident. I asked him if he would like to go for a walk in the woods instead and he quickly agreed.
Walking in the woods with Spike or Emily is one of my favorite activities, especially on a warm late autumn day.
We hadn't gone a hundred feet before Spike suddenly shouted, "Let's race!" and took off. His race was more shuffle than run but he had the spirit for it. I was so happy to see him running even as I analyzed every bit of his gait for weakness. He looked perfectly normal to me - until I saw some other youngsters tearing across a nearby field. THEY were running while Spike was just poking along. This reminded me again of the importance of following his physical therapy through to the end. "Better" should not be my standard for his recovery. "Normal" should be.
Regardless, we had a wonderful time walking, talking, throwing sticks into an algae covered pond and generally just messing about outdoors.
It's great to have him back.
Thursday, November 24, 2011
As the father of a normal, healthy four year old, I often watch animated movies. Very often. The same ones over and over again. In my search for meaning, I pay attention to every detail. After the 700th viewing of Madagascar, I found myself reading the credits as I had already memorized every word of the script and all of the intricate movements of the characters.
Of course, the credits list the voice actors and the animators and writers. After those folks, I figured there would be a few production assistants and interns. After all, it's a cartoon. How many people can it take to make it?
Hundreds. People doing things you never imagined as necessary. People doing things you never even knew existed. Yet without all of these people, there would be no Alex, Marty, Gloria and Melman (lion, zebra, hippo and giraffe for those without youngsters). There wouldn't be a video to occupy a little boy's time between medical procedures, between seizures.
The same is true for the production staff behind the Wonderful World of Spike. I'm not a social creature so my acquaintance circles tend to be fairly small but long lived. Therefore, I was surprised by just how many people stepped forward at just the right time with just the right actions, words, advice and skills when Spike became ill. I do not know how to adequately express my gratitude to everyone. All I can say is this has been the best Thanksgiving I have ever had and I am thankful for all of the people who made it possible.
At one point, I hesitated to list those deserving special thanks because I feared I would inadvertently leave someone off the list. I then realized that a careless omission probably wouldn't bother any of those who gave so freely.
So here's the short and undoubtedly incomplete list of people I wish to thank this year. In most cases, I have used first names only, both out of respect for privacy and because I don't even know some of the last names! I have included full names for certain medical professionals so that others who need help can contact them. Of course, you can always contact me for help too.
Noemi and Jaci, who custom sewed pajamas for Spike so that he could more comfortably change with all those tubes, lines and wires attached.
Ron, who followed Spike's saga every day and gave us hope with the incredible success story of his son's battle with epilepsy.
Dave, who built Spike a safe play table and who I knew was always nearby should I need anything at all.
Wilbert, who provided incredible professional flexibility at a critical time
Yelena, Alex and Tom, who have provided stability for me through the years even as I did my best to generate chaos. Knowing that they will be around and ready to team up again when this is all over gives me something to look forward to.
All of the Trailer Sailors, an online family who mutually support one another through all phases of life.
Timm, dive buddy, sailing mate and all around adventure partner who took a week off work, drove down from Wisconsin even as his Packers were playing in the Super Bowl and showed up, after being told not to, and taught me the value of having help nearby even when you think you don't need it.
Uncle Mark, who left his work and his own young kids to come out and help all of us.
Uncle John, who showed up unannounced at Duke to do whatever was necessary and then returned a second time, again taking time away from work and his family, to help. Along with Timm, he provided very useful entertainment with his skills as a seamstress.
Aunt Chris and Aunt Jenny, who took care of their families on their own so that the uncles could take care of Spike.
Aunt Ann, winner of the Favorite Uncle Award, who took time away from her job and came down to help care for Spike so that I could return to work.
Aunt Jane and Uncle Steve, who supplied critical off the record information.
Grandma and Grandpa, who not only flew across the country three times to help but also gave Spike something to look forward to when he was at his sickest.
Cousin Lisa, who thought constantly about Spike and sent me a touching e-mail at just the right time.
Lumberjacks, my high school classmates, who followed Spike's progress and sent an encouraging stream of e-mails throughout. Thirty years apart made no difference to this crowd.
Lori, Brandy, Anne, Larry and Rodney, my running team at Genworth, who gave me something else to think about and kept me from returning to my natural couch potato state of being.
Ed, who offered prayers and perspective that helped more than he realizes.
Genworth Risk Management, the greatest staff in the world. Too many to list but they all helped me through this by covering for me when I was out, offering prayers and success stories, sending e-mails that always lifted my spirits and by just being there in the background, forty five people I knew I could count on no matter what. This is the team that gave Spike his iPad, which helped carry him through so many tough days. You will never know how much you helped in so many ways. I miss all you guys.
Jim and Jocelyn, friends first, then colleagues, who started every conversation with a question about Spike's health and well-being.
Mark, who not only pulled the right benevolent strings to get Spike the care he needed but also came with his wife to see us at a most terrible time to share with us the success story of his own child.
Robb, who knows exactly which strings to pull to make the world a better place.
Leslie, Tim, Matt, Jeff, George and Anne who shared vital information about the medical adventures of their children. That information ultimately shortened Spike's illness by giving me direction in my search for solutions.
Leslie, again, for visiting us in the hospital and checking in throughout the year with offers of help and important information. May you find the solution you need and deserve for your family.
Judy, my lifelong friend, who, along with her amazing daughter Bethany, demonstrated that a family can bear the unbearable and move forward. Thanks also to the prayer circle she organized.
The hundreds of readers of this post from ten countries who have viewed my ramblings over 9,000 times. You give me a vital outlet that keeps me from internalizing all of this. I always feel better once I have updated the blog - almost as if I can let go a little bit. Your e-mails and comments have been great too.
Rachel, who kept me going with endless chat sessions through those long nights at Spike's bedside.
Jack and Caitlin, ICU nurses at Duke and the Cleveland Clinic, who helped Spike (and Dad) get through that first tough night after surgery.
Barry, a friend of a friend who just happens to be a respected expert in epilepsy, who took a lot of time out from his Sunday afternoon back when this whole misadventure began to give me the real scoop on what I could expect as Spike's epilepsy developed. All of the other medical professionals at that point were overly optimistic and reassuring. Barry gave it to me straight and that really helped prepare me for the progression of Spike's illness.
Candy, who arranged Spike's ketogenic diet that kept him seizure free for five months and who also took a special interest in his care and success.
Meredith, the most compassionate nurse I have ever met, for getting Spike and me through a very tough night and always checking up on all of us whether Spike was her patient or not.
Verry, Zach, Wayne and Regina, nurses at Duke, who went the extra mile to care for Spike and his family.
Molly, an absolutely incredible nurse practitioner at the Cleveland Clinic who could (and does) teach doctors, nurses and families how to get things done and move forward.
Security guard at Cleveland Clinic, name unknown to me, who always greeted me with a smile and questions about Spike. I used to lose my access badge just so I could go down and talk to her for a few minutes.
Maintenance engineer at Duke, name unknown to me, who sat down with me for a long talk one night at Duke and then always found a reason to stop by Spike's room and change light bulbs that seemed just fine to everyone else.
Transport orderly at Cleveland Clinic, name unknown to me, who shared his experience with his two autistic children and how to deal with hyperactivity.
Musical therapist at Cleveland Clinic, who occupied a very hyperactive Spike while we waited for his first surgery in Cleveland.
Ladies In Black, the occupational and physical therapists at Cleveland, who drove away Spike's lethargy by simply walking into his room.
Researchers, unknown to me, who spent countless hours developing the tools and techniques that gave Spike his life back.
CIGNA, Spike's medical insurer, who paid for some edgy diagnostic tests in addition to all of his other expenses. Their customer representatives were always prompt, knowledgeable and helpful.
Neighbors, who took care of the house, and always stood by if needed for anything at all.
Deborah, who's tales of sailing the South Seas reminded me that there is life waiting outside the hospital walls.
Emily, who put her brother first and never complained about the lack of attention at a pivotal point in her life.
Dr. Daniel Ostrovsky, a hospitalist at Duke, who patiently explained to me how doctors cannot be drawn into patient's lives because of the emotional toll it would take. He then got up early the next morning and, with his own four year old son, made muffins for Spike's birthday.
Dr. Deepak Lachhwani, neurologist at the Cleveland Clinic, who cared for the family as much as the patient. Although busier than we can imagine, he always took time to make sure we understood the issues and options and agreed with the medical team's approach.
Dr. Mohamad Mikati, Spike's incredibly talented and caring neurologist at Duke, who never stopped searching for answers and taught us so much about neurology so that we could make intelligent choices for Spike. Dr. Mikati gave us much more time than he could really afford for a single patient. Without those long talks, I doubt we could have made it to the end.
Dr. Jorge Gonzalez-Martinez, neurosurgeon, the man who ultimately gave Spike his health back. We will never forget what you did for all of us. From the bottom of our hearts, thank you.
Spike. Spike, most of all. This courageous little boy never gave up and never complained through 3,000+ seizures, 3 brain surgeries, 6 hospitalizations, 4 emergency room visits, dozens of IV insertions and blood draws, and over 800 unappealing ketogenic meals. You make your Daddy proud every day. Thank you for being my son.
Wednesday, November 23, 2011
There was malformed tissue in Spike's brain!
Hope we didn't pay too much for that shocker.
Seriously, the report indicated malformation that was likely congenital. I do not have all of the particulars because a nurse gave me a summary over the phone. I should have the full report on Monday.
Here's what we DO know at this point:
There is no malignancy (yeah!)
There is no evidence of an active underlying disease process
The seizure activity is almost certainly unrelated to the fall he experienced last year
It was very unlikely that he would have spontaneously improved and, therefore, the surgery was necessary.
Those are all good things to know. What we do not and cannot know is whether all of the malformed tissue has been removed. That's not as big a deal as it sounds like. Even if we somehow knew there were remnants present, we wouldn't do anything about it because a) they are not causing a problem, b) they may be in areas that are too critical to high function and c) there's nothing you CAN do other than a further resection and the surgeons don't just go poking around to "clean things up." In fact, you, I and millions of others may have areas of unusual grey matter and never know it because it does not cause a problem.
All in all, a good report because there were no nasty surprises.
I've been in Chicago working the past few days. I did not expect any real difference in Spike since he appeared fully recovered when I left on Monday. Wrong! He was running around and chattering away after I came in and he just looked so happy. Definite progress even though I didn't think there was any more to be had.
One thing I find interesting is the difference between his high activity level now and his drug induced hyperactivity prior to the surgery. I often wondered during the past year if I was being overly sensitive to his level of activity. After all, he's four year old boy and they're all hyperactive, right? Wrong.
Four year old boys are ACTIVE. Some are hyperactive but there is a big difference between the two. Spike was formerly hyperactive and had very little attention span. Now he just has lots of energy but it is directed towards whatever he happens to be doing from playing with toys to watching videos (he no longer just watches them = he talks about what is going on) to listening to stories. He just has great energy. When he was under the influence of the drugs, I wanted to tie him down. Now, I want to take him out to the woods or lake to burn off that energy while having fun. This is all good, fun, healthy energy.
Of course, high energy levels complicate picture taking. I took 20 pictures before I could get one where he was more than just a blur. Can't you just see all of that energy and happiness?
Tomorrow, I will have a special Thanksgiving post because this is going to be a very special Thanksgiving indeed.
Saturday, November 19, 2011
In the ten days prior to his operation, he had 343 seizures and that was low because he was anesthetized for significant time periods. If nothing else, the operation appears to have prevented hundreds of seizures.
Before I mention anything else, let me assure you that Spike did NOT have a seizure tonight. I say that because what did happen tonight was scary and I don't want anyone else to be scared even for the minute it takes to read about it.
I was sitting on the sofa with him, playing video games when I noticed he just wasn't acting right. He seemed uncomfortable in some way that he could not describe. He'd had a full day with no nap and I always worry about him getting tired but this seemed more than that. It was almost bedtime anyway so I figured I could just wait it out and take no guff about him staying up late.
"Daddy, I'm really tired," he said, breaking the oath taken by all four year old boys.
I jumped up and said,"Ok, let's take your medicine right away and go to bed."
"Ok, that seems like a good idea."
He then took his medicine without any delay.
"I'm really tired. I think I need to lay down now."
Oh no. No, no. Those are the exact words he used in January before laying down on the couch and having that first truly horrific seizure.
I scooped him up and raced upstairs to get him in bed. He seemed a little better after getting in his pj's and then asked to watch one quick video. I let him do that and he then put his head down and immediately went to sleep.
Ten minutes later, he stirred, picked up his head, moved it around a bit and fell back asleep.
Fifteen more minutes passed before he fully woke up and started talking. I told him to go back to sleep. With little complaint, he fell back asleep.
For most parents of four year olds, what I have just described is a near nightly occurrence. For me, it's absolutely terrifying.
I was sure he was going to have a major seizure tonight and then what? Call 911? What can they do that a full neurosurgery team could not?
There's a whole lot of dynamic rewiring going on in Spike's head as a result of the lobectomy. Maybe all of these signs are nothing more than indications that the brain IS healing itself. Unfortunately, there's just no way to know for sure.
One of my sailing buddies, Bad Bob, posted a dangerous link on his Facebook page earlier this week. I'm not a real Facebooker but his post caught my eye. It tells the story of an overweight, middle-aged man who one day decides to go running and, along the lines of Forrest Gump, just keeps on going. The video accompanying the story is quite motivational and it struck a chord with me. http://www.c25k.com/ben_video.html
A couple years ago, I was morbidly obese. I'm not going to post a picture because it would probably violate blogspot's Terms of Service. I had no excuse - no underlying health issues, hormonal imbalances or any of that. I just ate too much. One day I was driving along eating french fries and listening to my boys Papa Roach and the song "Change or Die" came on just as I passed the local Lifestyle Family Fitness gym. I looked in the mirror, looked at the gym, pulled in and hired a trainer. After nearly two years of concentrated effort, I had dropped 80 pounds and was in the best shape of my life. I actually enjoyed going to the gym nearly every day. I planned the trip of a lifetime to celebrate my fitness. Two weeks of adventure in New Zealand. Sailing, climbing, scuba diving, hiking and rafting filled my itinerary.
Spike had his first seizure four weeks before I was scheduled to depart.
Throughout his illness, I did my best to keep up my fitness schedule but my diet began to slip as I spent weeks in the hospital, staying up all night and eating junk food. I didn't gain a lot of weight but I certainly wasn't as fit as I would have been without all that pizza. Once Spike went on the ketogenic diet and became seizure free for several months, I returned to the gym and even hired a running coach to give me some pointers on turning running from a necessary evil to a fun activity. It worked and I began to train for my first 5K in late June. I survived the race and planned to pick up the intensity of my exercise ahead of a planned scuba trip to Fiji. As you've probably guessed, a few weeks ahead of THAT trip, Spike's seizures returned. Maybe the little guy just doesn't want me to go far away! He's certainly gotten his wish so far.
My exercise regime completely collapsed through Spike's three recent hospitalizations. I was a little more careful with my diet and only gained three pounds but my endurance and strength evaporated.
Now that Spike is home and healthy, I decided it was time to get serious about fitness again. That's when I came across Bad Bob's posting. The video and related websites motivated me to run another race. Unfortunately, I had the misfortune of recalling that I had actually signed up for the 13th Annual Apex Turkey Trot back in August when Spike was healthy. Today was Trot day. Uh-oh. Fortunately, I had a pile of ready to use excuses. With the exception of one painful mile in Cleveland, I had not run in four weeks. I hadn't run three miles in at least two months. I wanted to spend the morning with Spike. My shoes were dirty. The sun was in my eyes. Fine, no valid excuses. If I didn't run, I was a wimp, a loser. Ok, I can live with that as long as I don't have to sweat or breathe hard to be a loser wimp.
If Spike could go through all that he has, he deserves more than a loser wimp for a Dad. I figured I would go out and just take it easy. If I had to walk the three miles, so be it. I was not going to wimp out.
But I didn't want to walk three miles. If I'm going to run a race then I should run. My first race in June was a disaster in every way except one - I finished faster than my goal time. I threw out all of my training, ran too fast at the start and had a miserable race - but I finished. This time was going to be different.
My wonderful trainers, Sandra and Leslie, use the Jeff Galloway method of running. Basically you run for three minutes then walk for one. Repeat until you cross the finish line. Now that doesn't sound like real running, right? Not until you look back as you cross the finish line and see lots of people struggling far behind you while "really running." Like it or not, the Galloway method works for a lot of people and in our training sessions, it worked for me. Of course, I should have used it in my first race but I had no choice today. There was no way I was going to be able to go out and run three miles non-stop. If I just followed my training, I should be able to cross the line without too much embarrassment or help from EMTs.
Another thing I learned in training is that you are supposed to run at a certain rate of beats per minute - around 90. I don't know why but lots of smart, experienced people have figured this out so I can go with it. One of the issues in my previous training was my choice of running music. I found the fastest, hardest heavy metal and created a pounding playlist to urge me on. Papa Roach, Motley Crue, Metallica. That stuff is great for the first mile - especially if you only have to run a mile. Beyond that, monsters lurk.
Last night, I did a little on line research and found some tools to calculate the beats per minute of various songs. My playlist averaged around 180 BPM. Oops. When I should have been sleeping, I created a new playlist just for today's race. A collection of laid back Eagles tunes that should carry me softly around the lake and into a slow but survivable finish.
After reviewing a fresh list of excuses this morning (it's a nice day, I can't find my iPhone holder, the tires on the truck need air), I couldn't find any good ones so I headed for the park to join 600 other lunatics in a little unnecessary exercise.
With five minutes to go before the start, I hit the phone and started my music. Papa Roach's "Days of War" warmed me up. As long as I wasn't actually running, I figured some good punk metal would get my blood flowing. Unfortunately, the Eagles' "Learn To Be Still" came up next. Huh? That was supposed to be at the two mile point to calm me down. Where was "Change Or Die"? I must have hit the shuffle button. I didn't want to learn to be still at the beginning of the race! I crossed the starting line just as Lynyrd Skynyrd's "Free Bird" started. Oh no. I was counting on the Bird to bring me home. This was all messed up. I might as well take a right turn and head home.
And then Spike would have Wimpy Loser Dad.
"How Long" by the Eagles came on next and I thought 'pretty darn long at this point' but I rumbled on rather than allowing myself to be run over by hundreds of racers. That's right, I was NOT in last place - at least not within 100 yards of the starting line. A pleasant downward slope sped us on our way. I bookmarked that slope in my brain, knowing that, barring an earthquake, that slope would be going in the wrong direction on the final stretch to the finish line.
I had a "Peaceful Easy Feeling" for the first mile before a little "Desperado" ennui set in on mile two. I stuck to my run three minutes, walk one minute program and it seemed to work. Although people would pass me on the walks, I generally caught them on the runs. In any case, all I wanted to do was finish without embarrassing myself. I had set a rather optimistic goal of 40 minutes but I desperately hoped that I would crawl across the line in under 45 minutes. Heck, that's not much more than a fast walk.
I know what you runners out there are thinking. "40 minutes????? Is this guy even picking up his feet?" Look, I've always been slow. I set a goal for my first race of 36 minutes and, by golly, I beat it by a few seconds. Someday, in my dreams, I might run a 5K under 30 minutes but for now I'm Fat and Fifty and just trying to get across the line - a goal that seemed increasingly elusive around the 2.25 mile point.
No more Free Bird to carry me on. "Hotel California" lulled me through a painful half mile. I wished I had some of the drugs they were one when they wrote that tune!
My worst nightmare hit as I saw the final hill. I wasn't going to make it. At best, I was going to stumble across the finish line far behind everyone else. For the first time, I took a walk break early but only by a few seconds. Bad move. The next three minute run lasted one minute. Once you give up on that pattern, you're doomed. I walked.
Just then, a woman larger than me, and I ain't petite, ran up next to me and said "C'mon! It ain't that far!"
I started running again just as "New York Minute" started playing. Now there's a nice song to spur you across the finish line!
Harry got up
Dressed all in black
Went down to the station
And he never came back
They found his clothing
Scattered somewhere down the track
And he won't be down on Wall Street
in the morning
Lovely. Slow beat suicide ballad. Perfect.
In a New York Minute
Everything can change
In a New York Minute
Things can get pretty strange
In a New York Minute
Everything can change
In a New York Minute
The ground leveled out and I sprinted for the finish. In my head anyway. Anyone watching would not have called it a sprint. A stroll perhaps, maybe a saunter. No, better than that. A trot - yes, that's it. A little Turkey Trot.
I looked at the clock as I crossed the line. 36:38 Hey, not bad for an old, out of shape guy!
I then did what I am sure all insecure runners do. I looked over my shoulder to make sure there was at least one person behind me. Yup. Success!
When I walked in the house, Spike asked me, "Did you win?"
I handed him my Chick-Fil-A participation trophy and told the truth.
"Yes I did. I certainly did."
Friday, November 18, 2011
I've spent the past two days waiting for an update myself as I had to take care of business in New York. Once I fixed the world economy, I returned home to a vastly recovered Spike. His time with Aunt Ann went very well for everyone (except the uncles - they are toast in Spike's book now).
Spike is now happy, alert, active and, importantly, inquisitive once again. One thing that Ann noticed is that Spike would often talk with his expansive vocabulary and then stop and say that he didn't really know what a particular word meant. He would then wait until someone defined it and then carry on. He must have done that twenty times today with me. It wasn't that he had forgotten a word or used it in the wrong context. He simply wanted to know the precise definition before he used it again.
Spike also surprised me today by reading words off of some of his video games. At first I thought he was just remembering them from repetition but then I saw him phonetically work out new words. This is something he started over a year ago but completely lost interest in during the dark days. His lack of interest in reading had bothered me but I knew that kids progress at very different speeds as readers so I just sort of let it go. He seems hungry for the knowledge now.
Speaking of hungry, he's an animal at the dinner table. Spike has never showed much interest in food but now he is a chowhound. I expect a growth spurt any minute now.
His coordination and strength are improving every day. He still has to think about using his left hand but, with concentration, he can use it effectively. He starts physical therapy next week and I am confident that will further speed his recovery.
By most indications, he is on his way to a full, seizure-free recovery.
Unfortunately, Spike is also beginning to show, at least to his hyper-aware parents, some troubling signs. Certain twitches in his forehead and occasional odd looks on his face trouble us. These are not things anyone else would likely notice but we came to know all the signs of seizure activity extremely well. We could tell what an EEG would look like before they even turned it on. Now we have not seen anything that looks like a seizure but we are fairly certain that he would not show a normal EEG pattern today. That's not unexpected but, of course, it is troubling.
Spike tells me that he feels much better now than before the operation. When prodded for specifics about anything that feels odd, he refers only to his stitches (which come out next Monday). Of course, I will continue to watch him very closely but there really isn't anything I can do about potential abnormal activity in his head. In fact, the best course of action at this point is to simply enjoy having him back and help him regain strength.
On the topic of regaining strength, I am going to try and build up some reserves myself. If the seizures returned tomorrow, I just don't know how I could handle it. I need to get myself back to a physical, mental, emotional and even financial state where I can handle whatever happens. For me that means running a 5K tomorrow (that's gonna hurt!), immersing myself in work and, very importantly, spending some time on the water. Of course, enjoying time with Spike and Emily (when she's not too busy jet setting around the world!) builds strength faster than anything.
As always, thank you for everything. You have all been part of the team that's helped me keep going. Let's hope that all my future posts will continue to report on Spike's growth and good health.
Tuesday, November 15, 2011
Spike's dramatic improvement in function continues as he now walks on his own, uses both hands and talks constantly (welcome back Spike). He is happy, healthy and charming. So, of course, I immediately started him on his physical therapy exercises.
Reach for the sky, pardner!
If he can raise both arms, I don't see any problem with taking him off of disability and putting him back to work.
Put that appliance over here, buddy.
He held up to the eight hour drive better than his parents today. He played with his iPad, commented on the scenery, asked for some rock 'n roll and just kept chattering away. He never complained, whined or asked for anything. I know what you're thinking, maybe all kids should have brain surgery if that's the result!
I head to New York tomorrow for two days of business meetings. That time away from him is going to be very tough. It will get even harder as I resume my normal work schedule next week. The past few weeks have been very difficult in so many ways but at least I got to spend every minute of them with Spike.
Monday, November 14, 2011
It sure felt good to type that sentence!
As expected, his departure was delayed for several hours by the usual administrative issues so we hit the road late, knowing we would not make it home to North Carolina in one day. The drive takes about ten hours and that can be a challenge with just about any four year old.
Yeah, well the new Spike is not "any four year old." All the way through Ohio and into West Virginia, he simply sat quietly either looking out the window or playing with his iPad or an iPhone. No complaints, no hyperactive movement - just a great little boy.
Stopping just outside Parkersburg, WV, we found that Spike is now able to walk unassisted. He is still a bit unstable and we hold him at all times but we do not support him - he does it all himself. He has also found his voice again and was chattering happily while eating dinner. His sense of humor was on full display and he just seemed as happy as could be.
Over the past week, we have gotten used to his rather dramatic surgical scar. However, tonight was the first time that he saw himself in a mirror and he was surprised and perhaps a bit worried about it. I told him that the scar marked where the doctor performed the operation and that it would fade quite a bit in the next couple weeks. I then told him, and I believe this from my heart, that he should always be proud of the scar as it shows just how brave and how tough he was when he still just a little boy. He seemed happier after thinking about that. It's great to once again see that smile just creep onto his face as he thinks through something.
We've all played the game : how many things can you see in this picture. Time to try it out with the latest picture of Spike.
1. That's not a hospital bed he's sitting in
2. He's sitting unsupported
3. There are no wires or tubes anywhere
4. His hair is growing back
5. That's not a hospital gown he's wearing
6. He is focused
7. His left hand is gripping the iPad
The left hand grip is a big deal. The poor little guy could not properly grip the iPad in the car so he had to prop it up and try to control everything with his right hand. That's tough to do while playing fast paced video games.
Fortunately, he is regaining more function and coordination every hour. I mentioned him walking earlier. That demonstrates both strength and coordination on the disadvantaged left side. At dinner tonight, we challenged him to pick up grapes with his left hand. That's a fairly complex maneuver and he had to concentrate intensely but he did it. With each subsequent grape, the task became noticeably easier. The grip on the iPad in the picture came naturally to him, without any coaxing. Hugely encouraging.
Before leaving the hospital, I sat quietly with him on the bed and played Motley Crue's "Home Sweet Home" on the phone. He listened while staring off into the distance, obviously thinking about something. When I asked him if he wanted to go home to North Carolina or to Chicago, he finally looked at me and said, "California."
"Why California, Spike?"
"That's where grandma and grandpa are. I think they need to see me now."
And they will, Spike. Grandma and grandpa are headed East for the best Thanksgiving any of us could ever imagine.
A long parade of doctors are slowly making their way past Spike, giving him clearance to hit the road.
We hope to leave by 1 PM and slowly make our way south with many stops to let him move around. Should arrive home by early afternoon tomorrow.
Nurses started saying goodbye last night and Spike actually spoke to them! Always good to chat up the nurses.
Sunday, November 13, 2011
The surgical residents indicated this morning that he will likely be discharged Monday. We hope that will happen very early so that we can make it all the way back to North Carolina by Monday evening.
Occasionally, Spike now laughs at videos and games. That's a great sound to hear again! He also smiles but it is a crooked little smile due to his continued left side weakness. That should resolve itself soon as his brain rewires itself to coordinate the left side.
Good progress every day.
Saturday, November 12, 2011
Of course that meant that I was, once again, up all night but now I am fully refreshed and energized by his progress. As I type this he is once again laughing and even smiling.
The doctors are discussing the possibility of some inpatient rehab time. I'll listen but I am not sure I am signing up for that. If inpatient rehab means a couple hours of work combined with 20 hours in bed, I just don't think that will help. I am much more interested in getting him into a home environment in either Chicago or North Carolina and then taking him in for daily rehab sessions. He needs to move around, eat decent food and just be a kid.
I think today will show major improvement.
Friday, November 11, 2011
Since coming out of surgery, he has been very, very quiet. He will go hours without a single word which is just not like him. We did get him to communicate somewhat with hand signals and squeezes but for the most part he was just quiet and looked uncomfortable. When asked if he was in pain, he either did not respond or signaled that he was not.
The docs said that speech can take awhile to come back but Spike seemed able to talk when absolutely necessary but not otherwise. If he had to use the bathroom, he would say so but if you asked if he wanted to do something or have a particular food, he was silent for the most part.
After everyone else left and the room was dark tonight, I did the things only a Dad can do - I offered up all of the forbidden treats. I let him choose a cartoon or YouTube or video game or book - whatever he wanted because it did not look like he would go to sleep easily and simply insisting on sleep seldom works with even a healthy kid.
He did not show any interest in the usual activities. I then asked him if he wanted a banana.
"Yes please," he croaked.
He spoke! He actually responded without me pushing. I grabbed the banana and he tried to nibble away at it. He soon seemed to lose interest but then took a deep breath and said, "Can you cut it into small pieces please?"
That's the most he has said in 48 hours so ginzu knives flew and he immediately had little banana chunks - and he ate them, boy did he eat them.
He also sat upright which looks so much more comfortable than reclining with his head hanging forward, chin on chest. When he was done eating, I started to lay him back but he kept his head off the pillow and his chin on his chest.
"Does something hurt Spike?"
"No, nothing hurts."
"Why won't you put your head back?"
"Because I am afraid that if I put it back it WILL hurt."
That was not only a full sentence but a sentence FULL of information. I immediately ordered up codeine as he has been on almost no painkillers throughout this ordeal.
"Are you worried about anything else?"
"Yes. My one leg and arm do not move right. That makes me worry."
I explained that we knew that would happen but in a few days he would be back to normal and able to do what he wants. He was very relieved to hear that.
"Why didn't you tell us about your head and your worries before?"
"You did not ask the right way. My head did not hurt but I was scared it would. You asked if I could move my hand and I could a little bit but I was worried about it. I could not use lots of words either."
Equal measures of relief and guilt flooded me. The poor little guy, keeping all of that bottled up when we could have helped him lessen the pain and deal with his concerns.
I then asked why he did not eat much. He told me he was not very hungry most of the time but also did not like the food. Tomorrow, I will lay out a proper buffet for him and have food ready at all times.
Spike is now sleeping more comfortably than anytime since the surgery. The codeine should help but the communication helps even more. Nonetheless, I will err on the side of over-medicating for pain and try and figure out the source of any discomfort.
I think I can get him to talk now and, if I can't, I'll keep asking questions until I ask them "the right way."
He is very quiet right now but will talk with a lot of prompting from Dad. His surgeon says that is not unusual given the area of the resection. Everyone ...
As I was typing that line, one of the doctors came in and went through the usual battery of neuro tests to check the current level of left side impairment. Spike was not responding much at all. The doctor asked me to show him how I could prompt a reply so I pulled out the iPad and asked "What is this?"
"My iPad," declared the sphinx.
"Which game do you want to play?"
"Point to it and press the button."
Nailed it on the first try.
So he has been discharged! Ok, not really. I guess the doctors aren't up to date on the latest in Daddy Diagnostics.
Aha! He just now asked for his iPad without any prompting. Discharge? Heck, he's ready to start driving.
The doctor did change the last of his medications from IV to oral so that is one less item to check off the list.
The kid is not full of energy and I know he is not ready to leave but we all think that he will soon suddenly get that surge of energy and be good old Spike once again. I think he just needs a good eight hours of sleep and a full meal to really get him recharged. As of now, we are looking at a Sunday or Monday possible discharge.
Spike is not sleeping well (although at this moment I can see he has finally drifted off) and talks little. He seems uncomfortable but claims otherwise with hand signals in response to questions. He did hurt last night when someone moved his head and again when two IV lines failed but a little morphine took care of that.
His left side continues to improve. I have found he is more successful at coordinated movements if I tell him to think about it first. He concentrates hard for a moment and then everything works fine. It's interesting to watch the doctors and nurses try and get movement out of him. They are mostly unsuccessful until I tell Spike to do something other than "move this arm" or "push with that leg." I found that asking him to clap his hands or bump both of my fists is far more effective. It seems to take his mind away from a clinical request to more normal play motion. It looks to me like his motor skills will be fine.
All the various uncomfortable attachments came off last night except for the one required IV access they always have in. No more tubes, line or wires though. That's a great relief for him. At one point he had two IV lines, an arterial line, a catheter, five EKG leads, a surgical drain, a blood pressure cuff, a pulse oximeter sensor and an oxygen line. All necessary but all uncomfortable. Now he is free.
The surgical residents removed his head dressing today. He actually looks better than I expected (although not everyone in the room agrees) and will have a scar to impress the girls for a long time.
Our focus now is on him regaining strength and coordination as well as watching out for seizures. Strength and coordination work will take a month or two but he should be up and moving by tomorrow. The seizure watch will continue for the rest of his life.
Thursday, November 10, 2011
Wednesday, November 9, 2011
"So much for temporary paralysis of the left side," I told the nurse who, minutes earlier, had been trying to coax some reaction out of Spike's left leg.
The doctors had told us that removing the supplementary motor area would likely result in significant but temporary loss of function on the left side. Rehab would probably be needed for six weeks. The good news is that function is fully recovered as the body relearns coordination.
I think Spike is a little ahead of the curve in his rehab program.
I was holding him down because he was trying to tear off all the probes and tubes attached all over him. He slipped out of my grasp for an instant and ripped three EKG electrodes off in one move. He nearly tore out his arterial line which would have made my earlier blood donation of a pint look rather paltry in comparison to blood spraying all over the room.
A few days ago, Spike impressed the doctors by eating tortilla chips with his toes. Tonight he used that dexterity to grab an IV line and give it a good yank even though I had a hand firmly pinning his leg down. He got socks taped to his feet for that antic.
So I hold him down. I thought I could rely on a little left side weakness. My throbbing face provides evidence to the contrary. Now, I am holding his arm down with my right hand while I type with my left. He's almost asleep which means he's as safe as having his arterial line almost in which means he's not safe at all. It's going to be a long night.
But a good night. A spectacularly good night. I can say that I have never been happier than I was today when I came in, sat down next to him and asked him to squeeze my hand and felt that life force flowing through him. Of course, several hours earlier I was more worried than ever before as he lay on the operating table.
It's been an up and down kind of day.
Tomorrow, the serious waiting begins as we see, only through the passage of time, whether the operation was successful at eliminating his seizures. His surgeon said that the right frontal lobe showed clear signs of dysplasia. I asked if he could actually see that and therefore know if he got all of the damaged area out. He said he could not see it but could tell by feel. The malformed area was squishy. Well, ewwww. Remind me not to ask such questions again. In any case, he removed as much as planned but cannot tell if it was enough to create seizure freedom.
The affected tissue - ok, let's call it what is. Spike's brain will be sent to pathology for thorough analysis. We may finally receive some answers about the cause of the seizures. Or not. I'd place my bet on the or not. What does appear clear is that Spike would not have outgrown his epilepsy as many kids do.
The resection was necessary. That knowledge provides more comfort than you can imagine.
Realizing what had just happened, his eyes flew open and he clearly stated, "Uncle Steve is my favorite uncle."
After a moment and extensive prompting, he muttered, "Uncle John too" with a resigned sigh.
Sitting here now I realized something I should have thought of before. Yesterday, Spike had 69 seizures. That's more than most epileptics, even many with refractory or medically uncontrolled seizures, have in their LIFETIMES.
I had answered "no" to a high blood pressure question and the tech looked kinda funny at me after taking the reading.
"Today's a little different," I told her.
Spike continued to watch Mickey Mouse on his iPad as we pushed his gurney next to the table. The team knows well enough now to make room for me so that I can keep hands on him and help transfer him. As I laid his head down, I assured him I would hold his iPad so he could keep watching. Other kids are given Valium before anesthesia, Spike prefers to control his own sedation with games and videos of his choosing.
His eyes flicked away from the screen for just a second and seemed to look around the room but I knew better.
"Hands on him, please. No needles. He's about to seize," I warned them, keeping the iPad in his field of vision with one hand while reaching across to hold him down with the other.
I looked at the nurse across from me and said, "No matter what, you or someone else has to stand right next to him every minute or he will roll off when he seizes."
The anesthesiologist, sitting at the foot of the table, assured me, "He can't have a seizure now. We have anesthesia flowing. He will be fine."
"Whether he can or can't, he's about to," I said, looking at the nurse. She nodded and kept hands on.
Spike looked away from the iPad and up at me so I closed it and bent close to his face.
"It's going to be ok buddy. The doctors are going to fix you this time. I'll be waiting for you with Popsicles when you wake up. I love you Spike."
For the first time in 10 months, he looked just a little worried. I tucked the iPad under my arm and held his hand as he looked up at me. They put the mask on and he gave my hand a little squeeze.
"You need to step away now, Dad," the anesthesiologist said.
"Not yet I don't," I replied, knowing what was coming.
Spike's eyes moved left and the seizure began.
As I have done thousands of times in the past year, I held his right hand as he turned, keeping him stable and looked up at the clock.
8:48 - the final entry in Spike's seizure log?
An angel from Child Life stopped by and occupied him by blowing soap bubbles for a long time. He still thrashed but his mind was focused.
The same angel stopped by today and couldn't believe this was the same kid. Serene, happy, friendly and completely occupied with his iPad.
All because of one less pill.
Tuesday, November 8, 2011
The docs finally did get together this afternoon to more fully discuss little Spikeroo. The consensus view, which was represented to us as unanimous, is to remove the anterior mesial portion of the right frontal lobe including the supplementary motor area. Okey doke, I'm sure glad I've been boning up on my anatomy.
That gibberish means they will take a big chunk of the the right frontal lobe but not all of it. Think of the area as a slice beginning at the top of the forehead just right of center (when facing forward). The slice would come down the forehead but not too much towards the right side of the face before going back almost halfway into the brain. Kind of like one of those slices of fudge they make in tourist towns. Take a slice out of the middle of the fudge plank. Hope you weren't eating dinner while reading this!
They think the seizure area is localized enough that they can leave quite a bit of the lobe untouched. That reduces the chance of seizure freedom while also reducing surgical risks. It's a tradeoff with which I am comfortable. If full seizure control is not achieved, they can always go back and take a bit more out.
Now for that pesky supplementary motor area. It's a goner because the seizures appear to be firing right through it. The SMA apparently controls some coordination between the two sides of the body, among other things. The long term effect of removing it from a healthy four year old is minimal because other areas of the brain take over for the missing tissue. In the short term, up to six months, removal may result in significant movement deficits on the left side. The degree of possible deficit did not come out until I asked one of the neurologists what recovery from the operation would look like.
"If everything goes well, you could be out of here in five to ten days. Then you either go home or to a rehabilitation hospital depending on the loss of function."
Removing the SMA, it turns out, can even result in transitory paralysis. Well, hello side effects! The key word is transitory, especially in youngsters. Let's just hope Spike's transitory motor deficit is minor and very transitory. It's not as if we are not going forward with surgery, so let's just deal with it and get going.
Credit to the medical team and two doctors in particular for bringing together the analysis in a way that satisfied us. It took longer than expected (but we are on one heck of an accelerated schedule compared to most people) and a little bit of in your faceness by Spike's Dad but they got it done. Furthermore, the two physicians in question spent a lot of time today discussing details and answering questions. I think they are finally beginning to accept how I advocate for Spike. I have also noticed that my requests for drug changes are going through much more quickly now. If I ask for an emergency medicine, it's usually approved within five minutes. When I refuse suggestions on other drugs, I have not gotten pushback lately.
You have undoubtedly noticed that I never mention medical staff by name. That makes the writing a bit disjointed at times but it allows me a bit more freedom to express my opinions. At the right time, I will shower credit upon those who deserve it.
There were a couple of unintentionally funny moments, presented seriously, in conversations with the surgeon.
Yesterday, we asked questions about the frequency of several different surgical complications. His answer each time was "I cannot recall the last time that happened." Ok, but are you very good or simply forgetful?
Today, the surgeon offered to add Spike to the day's schedule after all the other surgeries were complete so that the conference on Spike could be completed. "That will make it a long day but we can do it..." with shaky hands and grumpy assistants I bet! No thanks.
Spike goes to the surgical center at 7 AM. Cutting commences at 8:30 AM. The Back Room Boys are ready to rock. Or so I've been told.
He has the 7 AM slot tomorrow.
After 50 years of abstinence, I'm ready to start drinking. (I can hear the uncles cheering)
Have I seen his last seizure, ever? I don't want to count any chickens early but Spike usually goes seizure free between 9 AM and noon. Last ever, of course, makes the huge assumption of surgical success.
Surgical residents just stopped by and Spike gave them a good luck seizure so I guess he's not quite done.
Is all this really necessary? He went nearly nine hours last night without a seizure. Watching him all night, I wondered if maybe he was all done. After all, last March he went from life threatening to zero seizures in the space of 24 hours. Should we really crack his noggin when he might be all right? Then he fires off ten in a row at 4 AM.
Does this new medicine work well enough? I have been aggressive in giving him his "rescue medication" the last couple of days. Sometimes it seems to work, other times it doesn't. "Works" means that he only has three or four more seizures after receiving the medicine before a cluster stops. I guess that's not what most people consider to be seizure control.
Is he worried? He won't talk about the operation and won't talk to the doctors much at all anymore. What's going on in (the normally functioning sector of) his brain? He seems calm - well, emotionally calm anyway. He's acting just like a normal little kid. Of course, a fifth of his life has been spent this way with aggressive medical treatment and testing. Maybe this is normal to him.
Have I done absolutely everything I can for him? There's just no answer to that, the toughest of all questions.
Monday, November 7, 2011
The docs think they can remove the seizure focal point without causing permanent loss of motor function.
By far, the biggest day of his life and mine.
Now THAT'S good news!
The only question remaining is whether to remove only the focal point or take a larger chunk. A small resection has less risk of surgical complications such as bleeding or stroke, less risk of loss of function and quicker recovery. A larger resection has a greater chance of rendering Spike seizure free. My feeling was that the surgeon favored a smaller resection because he feels that the area of concern is no so well defined.
Just as I was getting used to good news, he said that also plans to remove the supplementary motor cortex (SMA) because of its proximity to the seizure focus. Three words that I do not like in one sentence are remove, motor and proximity. He explained that this could result in some motor skills deficits but that they should completely resolve themselves within a short time (six weeks or six months - I heard both). Apparently, these deficits, if they occur at all, always resolve in young patients. A little physical therapy is a small price to pay, in my opinion, if it means a greater likelihood of seizure freedom.
He talked us through the procedure and recovery and we felt more comfortable than we have in a long time. He said the cortical stimulation would go forward as planned just to make sure the primary motor cortex geography was as expected. Once that was done, the docs would conference on Spike and he'd be ready for surgery first thing Tuesday.
Out of an abundance of caution, I asked what should have been my final question. Would he perform the actual resection personally rather than handing off portions of it to an intern or whatever they call surgeons in training. He assured me that he would perform the resection personally. I should have shut up at that point but, being me, that was unlikely so I asked a final, somewhat indelicate question just for general information.
"When you performed your first resection, how did you tell the patient and family that it was your first?"
He looked a little stunned so I explained, "I was just wondering how any surgeon informs the family that this is his first operation."
I heard a helicopter overhead. I chose to believe it was one of the lifeflight helicopters that are constantly coming and going. I didn't want to look out the window to see if it was actually a black helicopter with AMA on the side ready to swoop down and carry me away.
The surgeon stumbled a bit with the answer and said that, unlike other professions (such as my own), surgery involved over 10 years of careful study. I let it go at that, not wanting to make him any more nervous or bring down the medical profession hounds on me. We wrapped things up and he left but then returned just a few minutes later with the surgical consent form.
"I just thought we could get this paperwork out of the way today instead of in the morning."
I think he wanted to lock in this slightly kooky family. He was probably thinking, "First they thought I was young and inexperienced, now they don't want anyone but me touching Spike - what is it with these people?"
At this point, for full disclosure, he stated clearly that residents would be assisting him in various tasks but that he would perform the entire resection himself.
If there were going to be a next time - and there won't - I think I'd leave off that last question. (Admit it, you're still wondering about the real answer to the question.)
The cortical stimulation team then arrived in several waves with technicians, doctors, engineers, interns and fellows. They plugged stuff in.
Eventually, the doctor who would actually run the test arrived with his team. A rather energetic Spike greeted them by ignoring them. Not a good sign when his participation was crucial to successful completion of the test. The poor guy is just tired of all the new faces. Unfortunately, he had napped following another epic seizure cluster so he was fully loaded for chaos - while tethered by a dozen wires going deep into his brain. Just part of the adventure.
The test lasted several hours with lots of whispering, nob turning and note taking. The doctor had amazing powers of concentration, watching for tiny movements of various muscles as Spike bounced around the bed, watched loud videos, played games and threw toys.
In the midst of all this, the neurologist who had spent the most time with the SEEG results came in to observe for awhile. This is the guy who thought the focal area was dangerously large last week but then ran additional tests that showed he could significantly narrow it down. Spike's main Cleveland neurologist then stopped by the increasingly overcrowded room to give us a near final update even as the test was being conducted. According to the doctor, Spike was an excellent surgical candidate with a good (but unspecified) chance of success. Unless the stimulation test surprised everyone, and the stim doctor indicated everything so far was looking fine, Spike would undergo a major resection of the right frontal lobe after his patient conference Tuesday afternoon.
As toys flew past my head, I tried to clarify several seemingly contradictory statements. "I thought he was going into surgery first thing Tuesday. How can he do that when his conference is Tuesday afternoon?"
The SEEG neurologist said something about "it' happening Tuesday afternoon. I took him to mean the surgery but the other doctor understood him to mean the patient conference.
"Well, a day's delay at this point doesn't matter much," according to the doc.
"Wait a minute," I said. "Everyone has a different idea about when things are going to happen. It also sounds to me like you have different ideas about what is going to happen."
"These are all minor issues that will be resolved in conference. We are largely in agreement."
"The surgeon just told us that he believes he can take out a very small area but it sounds like you are thinking more."
"The more you take, the more certain you are of the outcome. That will be my vote."
Is this a democracy? "Ok, but he also said he was planning to take out the SMA, do you agree?"
"No, that doesn't sound right. Trust me, these are all minor issues." Minor. Like 'where to cut?'
I was on the verge of getting visibly agitated. Invisibly, my innards were churning. Had anyone talked to anyone else???? There were at least three schedules that various doctors believed in, two and possibly three forms of the procedure and who knows what various people thought about Spike's prognosis. I was also observing, in real time, miscommunication between two of the neurologists. It was only about scheduling of the conference but if that couldn't be clearly communicated, who knows what else was going on? I felt like screaming.
I kept my cool and let the two neurologists get out of the chaos as the test continued. I am certainly going to review the patient conference findings VERY carefully - especially if they hold the conference before rather than after the surgery!
Several hours into the stimulation test, the doctor told us he was now going to activate the electrode closest to the suspected seizure focus. Spike immediately went into a pre-seizure attitude. The doc and techs jumped but we said it was ok, we are used to this, just do what you need to do. They did not want to cause a seizure but i wanted to make sure they got all the data. A couple minutes later, of course, Spike had a seizure but it was no worse than normal. That came pretty much at the end of the test.
The good doctor then did two things for which I am extremely grateful. First, he explained that all of the stimulation tests confirmed the suspicion and hope that the seizure zone was in an operable area. No waiting for test results and further analysis, just a straightforward and immediate explanation.
"The focus is well forward of the primary motor cortex."
Phew! Yippee, even.
"At least one or two centimeters."
Huh?!?! Gosh, I hope they use thin, sharp knives.
Second, much to my surprise, he said "You are correct that the two neurologists were talking past each other." I don't know how he could have heard that with everything else going on - amazing concentration and noise filters. "Don't worry about it though. The patient conference really is the place where everybody finally sits down and carefully considers all of the information."
"So, the conference is not simply a formality?" I asked.
"Absolutely not. The conference is the most serious thing we do. There are 15 doctors involved and they are all focused. Everyone is heard and the issues are carefully discussed."
"Will you be there?"
"Yes, and I will make sure everything is clear."
Good. I still feel a bit uncomfortable but better having heard that. Except...when will the conference be held? The operating room was reserved first thing in the morning on Tuesday and here it was Monday at 5 PM.
The surgeon stopped by a little later to clear that up.
"We have Spike scheduled for 1 PM tomorrow (Tuesday) so he will not be first. That's good because his will be the only surgery I am performing at that time."
Wait a minute. 'The only surgery I am performing at that time?' What does THAT mean? Does the surgeon sometimes perform multiple surgeries simultaneously? That's sure what it sounded like.
I opened my mouth to ask but bit off the question. I don't need any more indelicate general information so long as Spike is the only patient during his own operation.
So, everyone is finally ready to go. Not all in the same direction or even at the same time but ready they are - and increasingly optimistic too.
That gives me comfort. I guess. The real problem here is that no single individual appears to be coordinating Spike's care and schedule. That leads to way too much stress for the family. Unnecessary too in my opinion.
I'll let you know how it all turns out tomorrow or next Wednesday or whenever. I'll tell you one thing - I'm not leaving Spike's room until I personally wheel him into anesthesia and check everyone's nametags. I worry if step out before that, Spike will be whisked away for who knows what procedure.
All right, I can't end on that note. The news today WAS good. The seizure focus IS in a relatively safe area. The surgeon appeared VERY optimistic. Last week, heck, last night we didn't know for sure if surgery was feasible. It now looks to be feasible, relatively safe and likely effective. That's what we have been waiting for.