Prayer Request For Joey Keller, UPDATED

After ten days of no news, there is this from Joey's Dad Nick, as recorded in his CaringBridge journal, published about about two hours ago:

Hey guys. Hope everybody's having a good weekend. We've been watching some things closely over last few days, concerned but not jumping to any conclusions. Last night and this morning we noticed some things and have been trying to figure out if its from the anti-seizure meds, low sodium, too much Taurine (I know, same stuff in Monster drink is in his Peptamen!!!) or what. Early this morning he was hiccuping and doing this thing with his mouth that he also did before seizure on the hem/onc floor before we ended up in PICU. We were this close to running him to ER. He thought he was in KY (grandpa and grandma's house) and was jumbling his words horribly. We were pretty freaked out. Yesterday, the meds zonked him out so bad, Eliz and I were discussing what we could do different to help him. Being too tired to talk is not an acceptable QOL (IE, change meds). When my son is too tired to even talk about Legos there is a problem. He just woke up and is acting fine. Although we haven't given him the VimPat or Keppra yet. Last night he got way worse AFTER giving his meds. Going to give them now. If we give them he could start seizing. If we don't (we always have per doctors orders) he could start seizing. Heck, the PI says these anti-seizure meds can cause seizures and seizure like s/e's. we just want him well. Like he was several days ago. There has been a slow decline over last few days. Somnolence and cognitive deficits. Please pray. Thank you. 

Joey

Though it makes me nervous to do so, and is clearly beyond the scope of what I can actually know, I want to reiterate my comprehension of Nick and Elizabeth's understanding of their son's situation.  I don't know them.  All I know is what I read,

They know, the three of them, that he won't survive this recurrence of an aggressive brain and spine cancer.
They are fervent Christians, but normal people, parents to a dying, precocious child.  There is dissonance.
They all want more time, but are aware of Quality of Life (QOL) issues, though there is a natural shifting of   sand meeting water, there is a tide at work.

They are not being cruel by trying every thing they can think of, and all of it has the Joey Seal of Approval. I've no doubt, not one bit, that were Joey to say "stop," they will stop.  The saddest, and probable, scenario is that he slips into some form of comatose state, as in this last crisis.  Then, I hope, the doctors they have come to trust will guide them to letting him go.

I've no right to write these things... but I am, I have, and if it offends you, well... move along.

UPDATE 10/21/2012, 8 PM:

Saw some new symptoms. 3 hrs ago we made it up to I70 (headed to Riley) and talked ourselves out of it. Saw some new symptoms w/in last hour that really concerned us, we're at ER now. Promised I'd keep praying folks up to date. We sure appreciate it. Waiting to see ER doc. 

What Happened to All the Clanging Brass Balls?

Maude: You know, at one time, I used to break into pet shops to liberate the canaries. But I decided that was an idea way before its time. Zoos are full, prisons are overflowing... oh my, how the world still *dearly* loves a *cage.*

**************************************************************************

It's a gritty morning.  I need to do a dozen things, eleven of them clamoring to have been accomplished yesterday.

For once I'll spare you.  I put the Maude quote up top to get that crap out of my system.

So let me tell you about the brief visit with my Hawaiian-shirted, sandal-wearing NeuroMan on Thursday.

By the way, he continues to throw his staff under the bus for having attributed my spasticity to cerebral palsy (though Thursday, he said MS).  He further maligned this poor staffer for having ordered him an artichoke and olive pizza when what he craved -- and he is clearly a man of cravings -- was anchovies and onion.

I forgave everyone again, assuring them that there was not even the opportunity for offense being taken, at which I got the usual strange looks.

I had written out a text for him, as it was also, on Thursday morning, a gritty morning and I needed to do a dozen things, eleven of them clamoring to have been accomplished on Wednesday.  The epistolary version of my appeal to him for help began:

today's visit has several goals and i'm not leaving without answers.
just kidding.

He let me down, he really did.  He made squeaky noises about my need for specialized researchers who have been dubbed by the Queen as acceptable distributors of drugs in off-label uses.  He said, this is something that PainManagement Dood should be in charge of... or anyone... anyone ELSE.  "But I don't know enough, I don't specialize..."

Alarms, sirens, bright lights made my brain hurt.  No one knows, no one specializes, you dimwit hawaiian-shirted, sandal-wearing pseudo-cool guy!  Even the moody medico brave enough to infuse me with vast amounts of intravenous ketamine knew that.

He dared start to lift a lip in a sneer at my exposé on neuroinflammation, neuroautoimmunity, and my multimedia presentation of the DVD "Why am I still sick?" which is about biofilm infections.  If you claim not to know, if you claim to be ignorant, then don't hint at an upper lip tic when presented with information.

So I hit him squarely in the nose and kicked him where his brass balls were supposed to be a-hanging.

Brass Big Boy Nuts

Okay, I either hit him squarely in the nose and kicked him where his brass balls were supposed to be a-hanging or I said, "I need you to step up."  It amounted to the same thing.

Turns out he yammers, too.  So I told him to step up, several times.  It turns out that the thought of my good MDVIP go-to-guy doctor sets off fireworks in my verbiage.  He always steps up.  He takes the risks.  He never yammers, never makes excuses, and the goddamn Queen curtsies to him.  And he doesn't get the money the specialists get (InfectiousDisease Dood?  Oh my God, I am still getting EOBs that are clearly built on the art of upcoding) -- nowhere near.

That may have been the persuasive part -- not my anger at NeuroMan's neutered attitude, but my admiration for MDVIP go-to-guy, and my desire to protect him.

I left the office with 3-months worth of memantine [a med used for Alzheimer's that is an NMDA receptor blocker], and a prescription for dantrolene, mostly used in MS patients for spasticity.  Add that to Tuesday's Mobic, and I strong-armed my way through a fucked-up medical system with some success.  I can now predict that October will not be the month in which I succumb to suicide's sexy call.  Should there be any improvements, you, Dear Reader, will be the first to know.