Stereo EEG (SEEG) - 1 week hospital stay

Charles surgeon is Dr. Brent O'Neil.  He was great.  With the help of the Robot, he placed 14 leads into Charles' brain, which entails drilling 14 holes into Charles head and placing a BOLT above each hole, then sliding a platinum lead into each hole which has 10-16 sensors in each one (making Charles attached to 177 wires at the base of his equipment).

Then, the EEG team (led by Dr. Laoprasert) on the EMU (electronic monitoring unit) watched Charles for a full week for brain activity, including a 5 hour stimulation mid-week which he ROCKED.  Charles had a pretty cool week, as rough as it was (lots of pain, seizures, wound pain, etc.).  He had the band, Dearling, perform in his room, and then the cool program Bags of Fun delivered a backpack FULL of fun presents, games, books, kindle fire, etc.  It was AMAZING.  It's a program designed for children with life threatening illnesses by a mother of a 6 year old who lost her daughter to cancer several years ago.  He was pretty darn excited.  It came at just the right time when Charles desperately wanted to go home.  I stayed the whole week with him at the hospital (he can't be alone on the EMU floor for even a minute).

Charles also had LOTS of cards to read.  He received 140 cards!  70 from classmates and 70 from friends and family through the hospital's on-line card delivery service, as well as 3-4 beautiful handmade cards mailed to his house (Thanks Bernadine!).  I am grateful for all the love and support and prayers from SO many friends and family (and some complete strangers) on his behalf.  Charles is home now from the hospital and is currently enjoying day 4 of no seizures.  There is a phenomenon where if you introduce foreign objects into the brain, you can have temporary loss of seizures, which has been a welcomed break.

And, now, we are currently awaiting his surgery for a brain resection where Dr. O'Neil will remove the section of the brain that is causing the seizures.  It is scheduled for May 19, but there is a possible opening on April 14, so we will wait and see if they could be ready by then...there is a LOT of preparation that goes into planning these surgeries, as you can imagine. 

Meet Dr. Laoprasert - Photoshoot with Coryn Nelson

Meet Dr. Pramote Laoprasert - Charles' Epileptologist.  Dr. Laoprasert is VERY smart, and so wonderful with Charles.  When it became evident in September that Charles case was very rare and difficult he took over, citing "he only takes the most challenging cases".  He has done 200 hours of research on Charles case and there is basically NO case like Charles.  There is no records or history in textbooks, etc. about PAIN seizures, and the location of his seizure source/lesion, etc.  And, definitely no one who has had a Stereo EEG in those locations.  SEEG is a fairly new technology.  Europe has been doing them for 40-50 years. But, the US has only been doing them for 8 years.  There are only 3-4 Rosa Robots that can assist in a Stereo EEG, and Colorado Children's Hospital is one of them (they are also in Boston and Cleveland Clinic, so glad we didn't have to travel for that).
Dr. Laoprasert wanted Charles to have a SEEG to pinpoint the exact location of his seizures. He was at the hospital every day, all day with Charles (across the hall, monitoring his EEGs) for 7 days.  He works SO hard and is SO dedicated to Charles and his future.  He has commented MANY MANY times how smart and special Charles is. 

I will post next about the hospital stay, but in the meantime, here is Dr. Laoprasert with Charles.  Special Thank you to Coryn Nelson for coming to the hospital to photograph Charles and his journey.  More pics to come this year! http://corynnelsonphotography.com/

Texas is Seizure Free for Christmas Break

We went on a road trip to San Antonio the week between Christmas and New Year's.  I don't think Charles had seizures that week (the only full week in a year).  We had a great week filled with fun activities with our friends, the West family.  I can only attribute it to LOW STRESS.  Annie and Micah took good care of us all week. As an added bonus, Charles caught his first fish. 

 The Alamo

 

PET Scan Nap

Another step in the process towards surgery is a PET scan.  Pretty uneventful, but one funny story.  Right before he went into the machine I told him "get in the zone and take a nap" (that way he would stay still).  He said okay.  The specialists looked at me like I was crazy.  It's only a 15 minute procedure.  Sure enough within 2 minutes he was snoring.  That's my boy, any chance for a nap.  They had to wake him up after 13 minutes, they couldn't believe it.

Neuropsychology Evaluation

As another step towards surgery, Charles had to have a 6 hour neuropsychology evaluation with a pediatric psychologist at Children's Hospital.  Some of you may or may not know, Charles is VERY smart.  I put him in his "Genius" shirt just in case they didn't get that :-)  He was a trooper.  It was a long day for him, even had to have a lunch break in between.  We got his results back a couple weeks later in the mail and his IQ was near the top of the scale.  I always thought it was smart, but now I have proof.  Its amazing to his doctors that no matter what he's been through this past 6 years that he's still doing so well academically and that it hasn't affected his cognitive abilities. 

September EEG Repeated with SPECT, Plus "Code Blue" Night

Each test and step Charles takes is one step closer to finding out where EXACTLY the seizures are coming from in the brain.  So, we went back to the hospital for another 1-week EEG, but also added SPECT this time.  He did great.  I slept every night at the hospital.  One night, I woke out of the dead of sleep at 3am (which I never do) and sat up and immediately thought I needed to check on Charles.  I ran to his bed and he was barely conscious, I immediately hit the seizure button AND the nurse call button and they came in.  2 Nurses totally panicking, and one asked the other under her breath "should we call 'code blue'?" I said ?WHAT?! If you're thinking about, then DO IT!"  I texted my mom (she sleeps with her cell and Ken and I don't) to call Ken (and he was there within 13 minutes - it's a 20 minute drive).  About 30 doctors, nurses, specialists, etc were there within a minute, all working on him.  His nurse did chest compression as they couldn't get a strong pulse.  He was ultimately okay, but what a TERRIFYING experience.  They don't use heart/pulse/oxygen monitoring as a regular practice on the EMU floor (Epilepsy Monitoring Unit).  Everybody asked how did I know to get up, my response is "God woke me up".  That's all I can say to explain it. 

That night (actually morning now) after things settled down, an Epileptologists by the name of Dr. Pramote Laoprasert called me to explain that he reviewed his EEG from the night and that he was okay (obviously not super great though).  He had a grand maul while sleeping, which has not happened to our knowledge.  He had a thick Thai accent and I was probably impatient and unkind based on the horrible night we had just had, but it was also hard to understand him (since it was on the phone and lots of people around) and I was exhausted being up half the night.  That was our first introduction to Dr. Laoprasert, which would later become our "favorite doctor ever".

Charles got lots of fun gifts that week from friends, neighbors, family members, etc.  One of his favorites though has been a patchwork (I Spy) blanket that my best friend Annie West made him.  It's been a GREAT conversational piece whenever he has hospital visitors, staff, etc.  The Child Life ladies stopped by one day and helped him give his bear an IV....it was VERY entertaining.

Wedding Weekend - Charles is asked to be Uncle Phil's ring bearer...

Charles' Uncle Phil (Ken's brother) and his Fiance (now wife) Kim, asked Charles to be the ring bearer at their wedding!  This was very cool and Charles was SUPER excited!  But the night before the wedding, I found him a little teary eyed right before bed time.  I asked him what was wrong.  He said "what if I have a seizure when I'm walking down the isle".  I said "let's say a prayer that, that won't happen".  His faith is amazing to me! He felt better after that and went to sleep.  The next morning was the wedding.  He got through the wedding ceremony and walking down the isle with NO PROBLEM.  Then, 30 minutes into the reception, the seizures continued, but he got his reprieve long enough to fulfill his responsibility. 

This is quite often the sight of my boys after Charles has seizures. David holds his little brother while he's recovering. So sweet. Thanks mom (Dianne Greaves) for capturing this sweet pic.