The Brain Quiz

Here is the Brain Quiz that lots of people have been asking about since its debuet at the Brain/Brian Party. The answers will be posted as a comment this coming Monday for those of you who want some time to try and figure it out.

1. True or False: Humans are born with all of the brain cells they will ever have.


2. Who wrote the following quote? “All we wanna do is eat your brains. We're not unreasonable, I mean, no one's gonna eat your eyes.”


3. EEG is an abbreviation for
   A. Electric enhancement graph
   B. Electroencephalography
   C. Ekky Ekky Goo
   D. It’s not an abbreviation. They just misspelled egg.


4. Which of the following have a character named “brain”?
   A. The 2008 movie Igor
   B. The 1960s TV series Thunderbirds
   C. The 1980s TV series Inspector Gadget
   D. All of the above


5. True or False: Jellyfish have a nervous system.


6. Finish the following quote. “Gee Brain; what do you want to do tonight?”


7. Toxoplasma gondii is
   A. A made up word.
   B. A toxin involved in brain cancer
   C. A virus that could potentially someday cause a zombie apocalypse.
   D. A candy company based in southern Venezuela.


8. True or False: Mental abilities are separated into the left and right cerebral hemispheres of the brain.


9. The brain consumes up to ____ percent of the energy used by the human body, more than any other organ.


10. Who is The Brain’s arch-rival?

Some thoughts after coming home.

We have been home for a day now. It has taken a little time to be able to write more of a final summary. After having a great appetite, being in good spirits and even getting up out of bed for awhile on Sunday, Adam seemed to run out of steam mid-afternoon. He ended up sleeping for about 16 of the 18 hours from 3 PM Sunday to 9 AM Monday. He also ran a low fever for a little while. He also had a seizure late Sunday evening. That was perhaps the low point of the entire week. It felt like we had gone through all this trauma to still be where we started.

Monday morning, the doctor assured us that it is not unusual for extra seizure activity in the days after surgery. These seizures should not be taken as an indicator one way of the other as to how successful the procedure will ultimately turn out to be. We have seen/heard a variety of different numbers given for the likelihood that the Multiple Subpial Transection procedure will yield a reduction in seizures - 70% (from WebMD), and 50% or 33% from two different doctors here. I know for my own personal coping mechanism, I try not to get my hopes up too high and hopefully I will be pleasantly surprised instead.

So we enter a long wait and see period. They don't want to change more than one variable at a time, so they will keep him on his full meds for now and we will see if he has less seizures. He had only had one seizure in Sept and one in October, so we would need to see no seizures for a good 3 months or so, before we could start to feel like there was a difference.

We have a follow-up appointment with the neurologist and neuro-surgeon in about 1 month. Earlier, when we were in conference with these same two doctors, they made some comments along the lines of never giving up on a patient/and being on board for the long haul. So it feels good to know that a couple of the top doctors in the field are committed to Adam's case. On the last day a different doctor mentioned a technique that is still going through FDA approval trials where a small device is implanted that actually acts like a tiny EEG monitor and when it detects a seizure starting it can perform a pace-maker like pulse to prevent it.

So we forge on ahead. And the ultimate outcome of this first procedure may not even have that much bearing on Adam's prospects as a Deep Brain Stimulation candidate - that is the procedure to address his mobility issues and what we came down to Ft Worth for, originally back in March, anyway. Oddly enough, one effect of this past week is that brain surgery doesn't seem all that scary anymore.

Adam is doing great at home. Again, we can't thank everyone enough for all the love and support that we have felt these past days and weeks. We will keep you posted! Love to you all.

Homeward Bound!

We've checked out of the hospital and are now homeward bound! Looking forward to our own beds and a less structured schedule. We'll post more of a summary soon. For now--a HUGE thank you to all of you for keeping up with us and sending thoughts, prayers, messages, calls...we felt your love and it made all the difference!!!

Steppin' Out

We've hit a couple of important landmarks today--Adam had his head bandage removed, and was also able to get out of the room on his own power! The first two photos below are a before and after shot of his recent looks...the lovely white turban is no longer, and the impressive looking scar is now visible in all of its glory!

This was actually taken a day ago, when his eye was still a little puffy:


And after the bandage was removed:


Along with the bandage removal, Adam had all of his attachments removed (sensors monitoring heart rate, respiration rate, etc.) so he can now move about a lot easier. We took a walk around the unit with our visitors coming along for company...and of course, Dr. Monkey leading the way! (We apologize that Dr. Monkey hasn't made as much of an appearance during this hospital stay...he has been rather busy with his various responsibilties!)


After a busy morning, we had a little quieter afternoon with rest time for all. The plan is still that Adam will be released on Monday since he is meeting the significant landmarks on his recovery. It will be very nice to be on our own schedule again, sleep in our own beds, and move to the next phase of recovery.

Visitors

Adam has recovered much faster from the surgery this time. He was awake most of the day and was back to pretty much a full appetite and normal foods. He even put his full weight on his foot on the floor as they moved him from the ICU bed to a wheelchair to move him back to a regular room. He had been laying down or reclining in bed pretty much solid since Tues morning.

We also had some visitors today, which was a great change of pace and much appreciated. Good friends Steve and Pat Poulter had driven down from Wichita last night. As they passed through Norman, Matthew and his friend Caleb joined them. They all arrived after visiting hours last night, but we all congregated at the hospital late this morning and when Adam was moved to a regular room around 1 PM, we hung out much of the rest of the day there. Adam really enjoyed having the company. Then later in the evening we had a Skype call with Aunt Sharon and Uncle Charles to cap off the banner day.

Being the weekend, we haven't seen our main doctors to learn anything new there, but hopefully on Monday. It feels a bit odd to have gone through the surgeries and have them go fine and with no negative side effects, but to still not really have any idea if the whole thing worked or not. Time will tell. At this point we are just glad to be on the 'after' side of this particular adventure.

What a Difference a Day Makes

By yesterday evening, we were frustrated. Disheartened. Unsure. If you've been following along, you saw it in our posts. The fact that each Brian and I wrote a post yesterday probably clued you in that there was a lot on our minds, and it wasn't all cheery. But today started with the reality that the surgery was going to happen today...and that in and of itself was an important step towards our eventual goal of returning home once again! Also, we were all in agreement to go ahead with the MST procedure, and whatever happened as a result...well, we would live with that result and move forward from there.

So we headed down to surgery, if not with a cheery excitement, at least with a sense of relief that this was our last trip to surgery for this round. I can't speak for any other surgical department, but here at Cook Children's, they work hard to break any tension in the pre-surgery procedures by interacting joyfully with the patient, and employing humor whenever appropriate. A great fit for Adam as well as for Brian and me! The surgery started earlier and moved more quickly than the other one, and we were being invited to meet up again with Adam by around 1:00 pm in ICU. At this point, he was still rather groggy, but looked fine.

Towards the end of the afternoon, he began to come around more, and agreed to try some ice chips, which led to a popsicle, which led to a pudding cup, which led to ordering soup from the cafeteria, which he topped off with applesauce and another pudding cup! In other words...for the first time all week, he really had an appetite! We also found something on TV that looked interesting, and he ended up smiling, and almost laughing at something silly on the show. Wow! Because of the position of the TV relative to his bed, it encouraged him to open his swollen eye, and over the course of the evening, the swelling really decreased and he was able to open the eye almost to the same extent as the other one!!!

Suddenly worrying about what may or may not have resulted from the surgery seemed to take a back seat to the joy in welcoming back a smiling and hungry version of Adam! I'm sure that there will be more bumps in the road to recovery, but today reminded us that we are going to get to where we need to be.

We also heard that we will likely be released to go home early next week...more on that front as we get to that point. The fact that this is going to be a shorter visit that we originally thought has a lot to do with how quickly Adam went into seizures after the first surgery, allowing the doctors to gain the data needed for decision making within two days. We are very grateful, and look forward to moving home as soon as it is safe and appropriate for Adam to be discharged from the hospital.

We look forward to learning more from the doctors about where we go from here in terms of Adam's treatment and medications, the possibility of investigating Deep Brain Stimulation for dystonia down the road, and what we should be watching for in terms of possible benefits from today's surgery. All in all, a much more positive outcome than we thought possible yesterday at this time.

Thanks again for sticking with us during this adventure--it has really helped to know that we have a great network of incredible people who are supporting us through "the good, the bad, and the ugly" of this grand adventure!

A Rough Day

One of our good friends who has had kids in the hospital and is also a medical professional gave us a good piece of advice before we came. She said not to be too alarmed if Adam looked pretty 'roughed up' at times through the process. As a parent it is natural to have a strong gut reaction to seeing your child in apparent distress, but that it may not be that big a deal medically.

Evidently a typical part of having this surgery is swelling around the face and eye on day 2 or 3 as fluid drains from the region of the head that was opened up. The area around Adam's eye started to swell last night and by this morning his right eye was basically swollen shut. Nothing serious and mainly annoying for Adam, but all day he has looked like he had a terrible reaction to a bee sting or something.

This has been a rough day so far. He had his third natural seizure in the wee morning hours. Mid-morning the doctor came by and gave us our first sense that hopes of the best-case scenario outcome had dimmed somewhat. Late morning they came by to do mapping of Adam's language area. They had Adam read out loud from a picture book (The Armadillo from Amarillo). The plan was to then send pulses into certain of the grid electrodes and see which ones interrupted his ability to read the book. The first attempt lasted less than five minutes before it triggered another seizure (which happens). After a couple hours of recovery, they had a much longer reading session but then it triggered another seizure.

So at that point, he had had three seizures in about 8 hours and was thoroughly wiped out. He looks like he has been through the ringer. He has slept all afternoon after having some morphine again. They are also putting him back on seizure meds as they have seen all the seizure activity they need to see.

So surgery again first thing tomorrow morning. They will remove the grids and perform the MST procedure. The ultimate goal of being seizure free with no meds is not looking terribly likely (although it could happen) but there is still a decent chance that he will have some worthwhile benefit. And we will know that we have gone as far as one can with current seizure surgery technology, which is worth something as well.

Multiple Sub...What?

One of the goals of the electrode grid placement was to get much more detailed information about what is going on in the brain during seizures...specifically, where they begin, and where they travel. Additionally, we needed to know what other functions are housed in the same locale as the seizure origin.

Before the grid placement, it was suspected that the seizures began in the temporal lobe of the brain, and that a likely approach would be to identify the very specific area of origin, and to remove that portion. However, by using the electrode grid, they were able to determine that the seizure activity actually began next to the temporal lobe (I forget the name of the origin locale) and that they traveled immediately (in 1-2 seconds, and before any outward symptoms of the seizure are even visible) to the temporal lobe, giving a false understanding of the point of origin. He described the area as being highly epileptogenic (I learned a new word today!) or prone to being an area where epileptic seizures originate. The image that comes to mind is of the schoolroom bully, who starts the trouble, but lays the blame on an unsuspected and innocent person, who then gets punished for their supposed activity. They also learned that Adam's language center is right smack dab next to the point of origin...too darn close to attempt any removal. Years of seizures playing out in the temporal lobe have affected and damaged that area (the surgeon's words were "pounded on"), which also led them to believe that was the point of origin. Disheartening news, but information that could not be gained in any of the other neurological tests.

So...in a conference today with the epileptologist (neurologist specializing in epilepsy) and the neuro-surgeon, we learned of their suggestion of a Plan B. Since the damage removal option could no longer be considered, they suggested a different procedure: Multiple Subpial Transections (MST). This is a new-ish (just over 20 years old in experimental usage, only about 5-10 years in more routine usage) procedure, but with a good track record. It is not uniformly successful, and the capability of predicting which candidates have a better prospect of success has not yet been developed. For this procedure, instead of removing anything from the brain, they make a series of small, shallow cuts that interfere with the movement of the seizure activity from one area to another. Back to our school yard analogy, suppose our bully tried to start some trouble, but couldn't find anyone to tell about it? The activity would just dissipate without making it into anything larger. Or as my dad frequently told us..."it takes one to start something, but two to keep it going." A seizure impulse that can't get anyplace else involved is much smaller and less effective...or so it seems at least for some people. This isn't the preferred method for epilepsy surgery (at least by our neuro-surgeon) since less is known about it in terms of identifying good candidates, predicting success, etc. In fact, he described it (along with other current neuro-surgical procedures) as somewhat of a "gladiator" approach, which I took to mean less refined, less specific, etc., and the possibility certainly exists for much more elegant solutions in the future that would involve less trauma to the brain. He would not be likely to even recommend this procedure in Adam's case except for the fact that the second surgery does have to happen...if only to remove the electrode grid. Adding this procedure only adds about 15 minutes to the length of the surgery, adds minimal additional risk, and does bring with it the possibility of improvement of seizure control, frequency, strength, and may also lessen the amount of medication that Adam needs to take.

We'll talk to Adam about it this afternoon (he was asleep during most of the conference)and decide between now and tomorrow morning what we are going to do. At this point, both Brian and I are leaning clearly to including this procedure, but we will get Adam's take on it, too.

Another point that came out in the conversation was the mention of Deep Brain Stimulation (the procedure/surgery that would be working towards relief of Adam's dystonia), and they mentioned that a wait of around six months would be the appropriate time frame to let the brain heal up before submitting it to another procedure. This was really nice information to gain, as we had not yet been given any information about the timing of these various procedures.

Lots to think about today! Keep sending those positive thoughts as we wrestle with this decision.

Day Two - Recovery from day one

Here's a outside view of Cook's Children Medical Center at night. It is really a top notch facility. That I hope you never have to visit. This is along my 2 block walk from the Ronald McDonald House to the hospital.



Here is Adam on Tuesday morning. He is still in ICU here. He was still going in and out of sleep a lot at this point. This wasn't too long before his first seizure at 10 AM. He has since had a second seizure at about 3:30 PM. It is looking pretty likely now, that phase II of the surgery will be on Friday. That is about as early as it could be and means we might be headed home before the weekend after next, which would be great. Adam perked up quite a bit more this afternoon, but was pretty much ready for a much longer sleep by about 8:30-9 PM.

First seizure.

Adam had a seizure at 10 AM this morning (Wed, Nov 2). Normally not something to cheer about, but we were very relieved at this point. One of the things that can go wrong in this whole process, is that occasionally the act of putting the wire grid directly on the brain in and of itself stops seizure activity. They have had kids that were having daily seizures, even with meds, and then with the grid implanted the seizure activity stopped. A couple weeks would go by and they would have to just give up and go back in and remove the grid (it can't just be left in), at which point they were back to full seizures again. They need the seizure activity to get the data to proceed to the next step.

Evidently, with the wire grid in place they can actually induce a seizure, but the data from that is a lot less likely to be useful. So we are hoping for natural seizure activity and we have our first! The EEG traces from these will help localize the damaged area well enough that they feel confident to go after it in phase II of the operation.

Day One...A Success

We're now settled in to the ICU, Adam is resting and/or sleeping, and Brian has headed back to the Ronald McDonald House for the night. It has been a full day, and we are all fairly worn out. Adam did great during the surgery, and is starting to feel a little more normal as the effects of the anesthesia are dwindling. He was able to manage a few sips of water, which is his first intake of much of anything in over 24 hours. Later he may even be able to branch out to some other liquids...life is good!

Tomorrow we will most likely be moved to the Epilepsy Monitoring Unit--same place we spent a week last summer as they hope to catch seizures with the newly placed electrode grid. Depending on how quickly they can capture the needed data, the follow-up surgery will take place as early as Thursday or Friday. We will then likely stay on-site another 3-5 days following the second surgery. Home still seems a long way off, but having this first surgery behind us is a huge landmark!

We will be keeping you posted on the progress over the next few days.

Once again, I want to make sure that everyone knows how important it has been for us to know how many people have been pulling for Adam and the whole family as we move through this adventure. Knowing that you were sending your love and your thoughts and your prayers during the day helped in ways that I cannot fully express. You are all very much appreciated!

I'm going to sign off for tonight, and promise to get back to some additional (and promised!) information such as the brain quiz and additional Fort Worth activities. With sincere love, affection, and appreciation,

the Kaney's

Success!

All has gone well...a little slower than originally thought, but we're flexible! We haven't seen Adam yet...very soon. Have talked to the surgeon and all went as expected, no surprises. Will post more soon!