The Surgery

First I wanted to say that the outpouring of support has been overwhelming, but in a good way.  You know that article that circulated around Facebook a few months ago about the signs that your "secretly an introvert"? Well, that's pretty much me and this is forcing me way outside my comfort zone.  It was easy for me to sit behind my computer screen and sum up what our lives have been like for the past year, but I had no idea how many people would be willing to offer a kind word or helping hand, and it all came at once.  I called my sister, in tears, because so many people are calling and texting and emailing and asking what they can do to help, and I feel completely frozen.  It's forcing me to make plans and I don't do that well.  It's also forcing me to follow up and sadly I don't do that well either.  But I want to.  I want everyone to know how much the support means to us and I am going to do my best to respond to everyone.  Just know that even if I don't respond right away, I read what you wrote, I probably cried, and I know that you are there to help in anyway you can and it means more than I can put into words.

So, the surgery.  Side note: I have no medical training and really have tried to keep the internet researching to a minimum.  I am just going to tell y'all what we were told.  We went in last week after meeting with the Neurosurgeon for the pre op blood work.  They were getting samples of blood for blood bank typing and electrolyte levels.  On Monday night we will bathe him with antibacterial soap to cut down on bacteria.  We will go in on Tuesday morning at 5:30 am.  Once Leeland is taken back to the room, they will begin IV and anesthesia.  That part will take about an hour.  They won't shave his head but just trim and possibly shave an area from his hairline to behind his ear on the left side.  The incision will be like a giant question mark behind his ear.  I'll try not to be too detailed here, but once inside the brain, he will weave through the left hemisphere to the ventricle and then to the corpus callosum (the middle part of your brain that separates the two hemispheres). He will essentially work his way down from the forehead to the top of his neck, disconnecting the left from the right.  They will not remove the left hemisphere.  It's kind of like unplugging an appliance.  It's still sitting there, but it's not running.  The neurosurgeon told us his part would take around 5 to 6 hours.  A drain will be put into place and then he will be stitched up.  We were told that we would probably see him around 2:00 in the afternoon.  The neurosurgery team is amazing and will be constantly walking back and forth from the operating room keeping us informed and updated on the progress of the surgery.  There are risk factors, but the need for the surgery far outweighs those risks, so we are choosing to focus on the positive.  As sad as it is, Children's has become a home away from home and we know so many of the Doctors, nurses and support staff that I know we are going to be well taken care of.  Leeland will spend the first night in the PICU for extra monitoring and then will be moved to the 10th floor/epilepsy monitoring unit.  How long he will stay in the hospital depends on how he is doing and when they will be able to remove the drain.  We were told to expect to head home by the weekend. Isn't that crazy? I thought we'd be there for a month.  Once home, we will manage pain with Tylenol/motrin and then resume activities as Leeland is able.  I asked the Doctor if I he would be confined to home for a while for fear of infection or if we would be going to the grocery store, and he said we'd be going to the grocery store (I'll just have to avoid Senior discount Wednesday at Publix). 

I feel like I didn't do a good job in my last post of explaining what this all means for Leeland.  In the words of the Neurosurgeon.  His life and our lives are going to be remarkably different, in a good way.  A successful surgery to them, means a seizure free child and the doctor is extremely optimistic that this will be a success.  We don't know why Leeland's brain is the way it is.  Whether it was something genetic or something that "just happened" is something that we are still exploring, but that deserves a post on its own.  Leeland's left hemisphere is small and underdeveloped and causing spikes or seizures all day long.  We noticed very early on that he didn't move his right side nearly as much as his left.  If he reaches for a toy, he does it with his left hand.  If he kicks, he kicks with his left leg.  But some of the big motor movements, he uses both sides.  He started clapping a couple of weeks ago.  Major tears.  This hemiparesis that presented in Leeland so early is a blessing.  Hemiparesis of the right side is an outcome of this surgery, but Leeland's is already there.  Another major risk with a left hemispherectomy is loss of language/language processing.  Leeland makes some sounds now and blows raspberries, but no words yet.  Leeland is developmentally delayed, and as a parent it is heartbreaking to watch.  But when these doctors look at him and his charts and what his brain is doing, they are amazed at what he can do.  His epileptologist feels that based on his MRI, EEG, and PET scan, his left brain isn't doing anything now but causing a lot of harm.  All of the movement we're seeing on the right side and all of the language we're hearing is already coming from his right brain.  She feels that the right brain has already taken over and the sooner we can get the confusing left brain turned off, the sooner the right brain can really start taking over these functions.  Isn't that amazing.  We will continue Physical Therapy, Occupational Therapy, and Speech therapy.  Leeland will walk and talk. Period.