In a Nutshell...

It’s 2:29am our first night out of the joint and I can’t sleep to save my life.  It could be because I had warm sake before bed, or it could be because my mind is whirling with the variables involved in the decision before us.  The four of us (Mama B, Lincoln, Eva and myself) are staying at the Kitano, a beautiful five star hotel on Park Ave.  We all took an exhausting walk up 5^th avenue tonight.  Came back to the room for bubble baths and room service.  Mama B and Eva surprised us by getting us our own room.  They knew that I’d have to sleep close to Lincoln because there’s still a very good possibility that he may have a szr.  And my mom has been adamant that I rest.  So sweet.  Currently I have two blond, freckled kids sleeping in my room, one per double bed.  Both are freshly cleaned and sleeping deeply, Lincoln is even snoring.  Eva and I opened the drapes so we could fall asleep looking at the Empire State Building.  Mom is sleeping in her room.

So why am I awake?  And why did I sleep well in the hospital?

Well, for one thing, sleep was scarce in the hospital.  We really relished whatever we could get.  For epilepsy patients it is a given that you will not sleep much during your stay, because if you’re not put on sleep deprivation, your neighbor surely will be.  Or your neighbor will be a crying baby.  Or your neighbor will have to spend all night with the light on so the cameras can work.  Or your neighbor is up seizing and the nurses are in and out of the room all night.  Or your neighbor’s father snores all night (I cringe when I see that a dad is spending the night with his kid – our roommate – and not the mom). Or, worst-case scenario, your neighbor sleeps with the TV on.  For the most part, neighbors are very considerate of each other.  We have been lucky enough to only have considerate neighbors – even if they do snore.

So one would think that I should be sleeping like a baby now.  The bed is downright decadent (I forgot to mention that parents sleep on a hard, pullout chair – holy back ache).  And it’s so quiet here.  I’m not waiting for a seizure now in the hopes that one will occur.  Instead I’m up every so often to check on him because I don’t want one to occur.  Same stress, different reason.  And just to make me a little more nuts, I only have a new medicine to use in the event of a seizure.  Now is not the time to try a new med.  But the nurses have assured me that we’re only blocks away from the hospital.  I pictured myself carrying his stiff, seizing body – this provided me with no comfort whatsoever – they meant by ambulance.  My head is spinning because I know that within the next few days our doctors are going to meet do discuss where we should go from here, the issue being do we go conservatively or aggressively.  

This is what each word entails, as I understand it:

Choosing to go conservatively has it’s advantages, namely that Lincoln will probably retain the high functioning of his left hand (his strength, and use of his fingers, bilateral use  - high functioning for a hemiplegic), not to mention any other parts of his Lincolnness that the right side controls (more motor function, memory, etc).  I think it’s a given that he will lose peripheral vision either way. However, the downside is that if we choose to go conservatively, some seizure causing tissue may be left in the brain – and he may continue to seize after surgery, which usually means future surgeries.  And a question that I need to have the doctors address is – could these seizures be a worse kind (drop attack), or would they be the same (just as bad, but in a different way)?  If we choose to go the conservative route Lincoln would most likely be scheduled for a two stage surgery, meaning that stage one would be information gathering; take off part of skull, place grids directly on his brain, feed wires into his brain and once again WAIT FOR A SEIZURE.  This stage would help doctors to find the precise origin of his seizures, which would enable them to remove less of the right side.  What the doctors will be considering is how hard it is to get L to seize, the danger involved in prolonged monitoring with foreign materials on and in his brain, status (prolonged) seizures and swelling of the brain, to name a few.  And really, just how necessary this stage would be when so much of the right side of the brain is purely scar tissue.

 

Choosing to be more aggressive with surgery means that he would have a full, functional hemispherectomy.  Meaning that most or all of the connections between the right and left side of the brain would be severed and some tissue would be removed.  Originally this is what made most sense to all of the doctors because

1 the MRIs show such extensive structural damage from his birth injury

2  the videos of his seizures show that the right side of the brain controls nothing other than the left hand (and that is why he would lose function – this seemed/s like a fair trade off)

3  what little information they were able to get from their EEG and Albany Med’s shows that the szr activity is not crossing over to the left side (so get rid of the right side and all seizures should stop).

The problem here is that they were not able to find the exact origin of the seizure on Sunday because, get this, the one electrode (lead) directly above where they suspect the szrs to start is the one that was not attached properly.  What are the chances?  So, if everything happens for a reason, which I believe unfailingly, I can only assume that the reason here is that we are supposed to go with a two-stage surgery.  That is my conclusion after an otherwise unproductive week in the hospital.  Now we wait to see what the doctors say.  And then we talk.  In the interim I bombard Dr. Singh with questions and concerns that she in turn shares with Dr. Devinsky and Dr. Weiner.

 In a nutshell, it comes down to this:

Aggressive surgery means only one surgery that disconnects the entire right brain and leaves Lincoln more disabled in the left hand, but quite possibly seizure free for life.

 

Conservative surgery means that doctors would painstakingly try to save any good tissue that they can find on the right, hopefully retaining the use of his left hand.  But this requires at least two surgeries and the possibility that he may need additional surgeries in the future if szr-causing tissue is unknowingly left in the brain.

While I love the honesty of our doctors and the transparency of their decisions, I become more worried when they tell me of their own worries or concerns.  But perhaps that’s why we’ve chosen to go this route with them….. they don’t take their jobs lightly and they realize the  risks involved with every decision.

 

I see it like this:

Do we sacrifice his left hand for seizure freedom?

To make this decision, you have to know just how injurious his szrs are to his brain.  A lifetime of szrs poses more of a risk to his brain and his mortality than the surgeries.  Google: Mohamed Ali Syndrome

 

Well it’s 3:48 am now…I think it may be safe to try sleeping again. It’s crazy that I get better sleep in the hospital than I do anywhere else.  I’m pretty sure it’s because he’s being monitored around the clock there – for seizures and even their effect on his heart.  I believe that’s called, “shared responsibility” – the responsibility is shared by many more than just Andy and myself.

Good Night all.