Subtitle

...previously "Wayne & Julie Bacon's Journey"

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Thursday, July 26, 2012

Chop And Change

chop and change (British & Australian)
to keep changing what you do or what you plan to do, often in a way that is confusing and annoying for other people [per http://idioms.thefreedictionary.com/chop+and+change]
Let's just get one thing straight--I'm not the one changing the plan, I'm the annoyed one.
A very senior neurosurgeon came into Wayne's room around 4:45 pm and showed us the CT images (see one below) from last night's ED visit. He pointed out how the fluid is collecting and pushing in on the brain and out on his scalp. He stated that he doesn't care where the surgical team puts the shunt (i.e., ventricle, outside of the skull, in the midst of the left hemisphere), but he knows it's what needs to be done--there's really no option.  The shunt would be a tube that is placed under the brain, up into his left ventricle, down through the base of the skull, curving around to the clavicle/collar bone, then coming up to a subcutaneous level (so just beneath the skin), down across his chest and ribs, and into his stomach.
After that doctor left our room, Wayne looked extremely dismayed, saddened, teary-eyed, and defeated. I "listened" and rubbed his arm and just kept telling him it would be okay, it's standard procedure, and... there's no choice right now--just like when we had to remove half of his skull on Apr. 2, 2008 to save his life... this has to be done and we'll do our best with whatever comes and results.
Then, Wayne's doctor, the one who has performed all three of Wayne's cranial surgeries, came to the bedside around 5:30. He is matter-of-fact & to-the-point, but will not downplay our concerns, kind of guy.  He incorporates our comments & concerns & suggestions, he really listens, he states that I, Julie Bacon, know Wayne better than any of the health care providers and that he has to trust me to indicate when Wayne's neurological state has changed, & he asks 3 times if we have more questions.  Great doctor!
This surgeon outlined a totally different plan...

I have some great news (but please keep the above phrase & description in mind while absorbing the now-current plan for Wayne):
    Wayne's neurosurgeon decided around 5:30pm that he'd really like to observe Wayne for another day and the bulbous pocket of spinal fluid hanging out on his left temple and corner of his forehead.  The doctor stated that he believes that if we keep Wayne inclined in his hospital bed, and he gets up and starts moving around and walking, the fluid will drain on its own.
Whaaaa?!?!?! So no Shunt...???
"No, that would be our last choice."
"Then why have we been waiting all day for the OR to call, and Wayne hasn't been able to eat all day?"
"I put the shunt on the table so all the staff and you guys were ready for it. But observing him over the last 24 hours and assessing it with the team, we believe his body could take care of this.  And we want to give it a chance to do that. We'll give it another 24 hours, he can't recline less than 30 degrees, we'll get him up and walking, I'll order the therapies (OT, PT, and SPEECH) to come and evaluate him tomorrow.  I'm not sure what's going on with all the difficulty with his leg and core muscles. But, we need to figure that out."
"Wow--okay.  We are definitely fine with waiting to put in a shunt!!"
Wayne instantly perked up, inclined his bed, and his spirit was lighter, ready for the challenge of doing this on his own versus an "implant".

We may still need to do the shunt, but for now, Wayne's in control of his body again... which is what any 41 year old strong-willed man would want.

He still has some additional deficits since the surgery.  His comprehension has declined. His physical ability to sit-up, stand-up, and walk on his own has diminished--he had major surgery, but it's not just slightly worse, it's definitely declined. His limb apraxia is much worse.  His ability to communicate is worse. He even used his eating utensils incorrectly--he was using the soup spoon to try and pierce and grab his entire pork chop. I said, "Try using the FORK." This does several things--it tests his listening/comprehension, it tests his ability to change what he's already planned his body to do, it tests his ability to look at the utensils and pick which one is a fork. I became very saddened by him using his soup spoon because this is what he did frequently back in May 2008.  "Really?!? I'm back to teaching him toddler things again?!?! We're back to one month post-stroke! For the love of.... (*deep breath*)... Okay, well--we taught him all this before, we can do it again."
He picked the fork out of the four eating utensils in front of him, and he used it correctly! When he'd cut and eaten about half of the pork chop on his own, I used the knife to cut up the remainder of the pork chop into four pieces.  Not even thinking about it, I laid the knife across the back of the plate.  He picked it up and was trying to scoop the pork chop pieces onto the blade and get it to his mouth. CRAP--this really is happening!  So, I demonstrated how all of the utensils looked when I tried to "stab" the meat with them... the soup spoon, the teaspoon, the knife, and the fork... "Which one works best?" He chose the fork. Thank forken goodness!
So this is one "slice" of the images of his head--the dark bit inside the skull is a portion of what the stroke killed. The narrower skull is actually the synthetic bone flap/skull piece.  The schtuff outside of the skull is all the swelling and fluid build up.

And here's another slice a bit deeper.

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