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Monday, November 30, 2015

Even Less Sugar: It's Time For a Game of "What's That Goo" (and other tv shows that are my life right now)

Answers: "The plot thickens," and "I've never seen this before."

Question: What are "things you never want to hear from your brain surgeon following surgery?"

Last week, our medical team concluded that Ian's shunt was not working properly. This is not an uncommon occurrence in shunts, and they are frequently adjusted, replaced, etc. Not particularly worrisome to them, although obviously disconcerting and inconvenient for us. (Have I mentioned before how un-cool it is when Ian can't brain? I'd rather evacuate his bowels for him than watch him try and fail to come up with the street he lives on. This is not hyperbole.)

At first, they were contemplating starting at the bottom, drain section of the shunt to determine the site of the blockage. Gook in the drain? replace that part, but leave the brain part alone.

However as we got closer to the procedure, the surgeon decided it was better to replace the whole thing, assuming that if there was a clog (basically proteins in the csf/blood attach themselves) in the drain, there was likely to be detritus on the brain end. And heck, while we're in there, let's get a darned good look at this "pooling goo" we think could be infection or maybe it's not. So with a teeny-tiny camera, the doctor poked around to see what he could see in the ventricles.

Dr. A was able to extract a sample of the "stuff," which he described as "cottony, white, puss-like stuff," that was unlike anything he'd seen before (this is too simple a retelling, as he went on to describe how he HAS seen stuff LIKE this, but it's been in fairly disease-ridden patients who are symptomatic of infection and metastases). Still, the statement remains: he'd never seen this before. He CALLED a guy fellow brain surgeon. During surgery. He sent a sample off to the lab. When the results came back "no infection," he WALKED a sample down to the lab to watch them test it himself (all of this shenanigans meant surgery took much longer than we'd expected, and we were concerned when they called us to say they were in the midst of this pathology stuff when we'd expected him to be sewn up and in recovery from a shunt replacement procedure). Still: no infection detected.

So we're back to Goo Theory: the stuff that's up there, clinging to the ventricles and the old shunt, is detritus. It's goo. It's puss, scab, whatever-material, but it's not infection and as far as we can tell, ALSO not tumor.

Ian got another small brain wash, and the surgeons installed an external drain (see previous posts - we had one, we faced the possibility of having one long-term, etc.). They chose this route so we could be ABSOLUTELY CERTAIN that no infection remains before installing new hardware. As in all infection testing, even with initial negatives, things could grow later on; so the goal is to be a comfortable distance from surgery to be confident nothing is alive up there and growing or able to grow, say, once we discontinue antibiotics.

So it was back to the ICU; when that Cheers guy sang about wanting to go where everybody knows your name, I DON'T think he meant rolling into the Neuro ICU and having the nurses all shout, "Ian!" ... but that's kinda how it is up there for us. They're glad to see us, but of course don't want to see us. And the feeling is mutual.

Today, after several days of the external drain, he'll have a new shunt placed. Then we'll have some recovery from that, and close monitoring of his cognitive state: we've experienced Ian's brain on high pressure, and it's not good.

We COULD be discharged as early as Wednesday, however at this point, with surgery so late in the day, I'm guessing more like Friday.

So: Who Wants To Be a Brain Surgeon? Not this girl.
Who Wants To Be a Nurse? Not me, but I can do it if pressed.
Who Wants To Get This Infection Stuff Behind Us So We Can Kick Cancer's Butt Again?

ALL OF US.

3 comments:

  1. Amazing. Just amazing. You will be the new freakin' Wonder Girl by the time all this is through, you will be so strong. And I pray Ian will be brought back to himself, also. Kick Cancer's Butt? I'm ready to anything to help you guys do that. Have not stopped praying and won't. Keep remembering, NEVER LIMIT GOD. And tell Him you need HIS strength, not yours.....HIS. God bless!

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  2. Rachel I am praying for Ian and for the family. Love ya your friend

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  3. Your family is in my thoughts and prayers. I have been keeping up to date with your blog posts and updates from church. Ezra is in my daughter's class this year. If there is anything I can do to help with school, please let me know. Patti

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