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.

Even Less Sugar: Home Care, Therapy, and Back to the Hopsital

The problem with being a good communicator and a constant updater is that when you don't update people go ... "Hello? What's the word?"

To be quite honest, I've spent most of the last few weeks asleep on the couch, razed only for meals and medication times. Exhaustion -- depression -- whatever. I can't concentrate long enough to write an email, let alone a blog post, especially with the nebulous and fractured information I have to work with.

His occupational therapist was happy with his progress enough to discontinue this week. His speech therapist was working with him, carefully helping him navigate word finding and memory issues. His physical therapist was getting him MUCH stronger than he had been in the hospital – he was able to walk to the bathroom (downstairs) on his own from his hospital bed in the living room. We made tandem treks upstairs to shower.

However, starting a few days ago, he had bouts of confusion – nothing monumental but still different and less cognition. Two days ago things went downhill quickly as he was basically talking nonsense, repeating that nonsense over and over ("I need to put the windows in order"), and unable to follow direction (to lie down in his bed, for instance, did not make sense to him. He couldn't understand what I was saying, and he didn't know how to do it when he did). He also threw up – all signs of something bad going on in his brain. We headed to the hospital.

Yesterday (the day after admission through the ER the night before), doctors tapped his shunt to test the cerebral spinal fluid for infection. They've seen what they consider to be possibly infection on MRIs – but it also could be other things. It is not tumor material; the current areas of concern are not where the tumor is at this point. Despite being on antibiotics for four? months, the infection? or whatever it is, has not been eliminated.

The initial results were extremely low white blood count which is a good thing. The 24 hour turnaround is also favorable. There will be another check at 48 hours. They've changed one of his antibiotics to something else. Trial and error? Possibly.

The issue then, is: What is causing the (current) problem? What's that area(s) we see on the films? The options seem to be 1. intracranial pressure (i.e. swelling and fluid presence and the brain's ability inability to go back to normal size as a result of all of the trauma, or infection, or both; or 2. infection which has not been eradicated by the antibiotics, or is new and different than the one we've treated with them before, or detritus from breakdown of dead tissue and basically a pool of scabs (you're welcome).

If there is infection ON the shunt, the doctor says it will not respond to antibiotics; it will have to come out, with an external drain to replace it. Complications: possible increased/different infection introduced, healing time and potential for infection as a result of THAT process, and the external drain would be an indefinite fix ... a (VERY) gradual process of changing the speed/volume of the drain until pressure is stable and a shunt can be reinstalled. This could mean a year-long hospital stay, no joke, which has its own complications, namely EXPOSURE TO INFECTION AT THE HOSPITAL.

Also on the table would be another brain washing as before. This carries its own potential serious risks i.e. another brain surgery skin healing etc. infection etc. etc. Also mentioned has been a direct injection of antibiotics to the brain, however that has its limitations as well. I think this is kind of like three rocks and three hard places.

I came into the hospital room today to a bright, sunny room, Ian sitting up in a regular/lounge chair, eating his breakfast, smiling. At some point later on, he started to say odd things and make less sense.* I decided that we needed to talk while he still had the capacity to understand and communicate ... about these options, and what he thought about doing the most aggressive things vs. a more conservative approach, were we given the choice and he was at his current mental ability. That conversation will remain private, but it did involve tears.

Tonight doctors installed a lumbar drain, as they've done before, to lessen the excess pressure on the brain. We've had varying degrees of success with these in the past, so I'm not holding out much hope, but we'll wait and see... Unbelievably, because of this wait-and-see stance, they're talking about sending him home by Monday.

He's being volleyed back to me, to determine if things go awry enough to head back to the hospital. Oh joy.


* 1. He shouted "RELAY" into the hallway, to/at no one, because he said "there's a kid out there who isn't supposed to be there."

2. Because a nurse was reading menu options to a patient to choose from, he told me they were having a buffet out there and he wondered why?"

3. He wriggled his feet and meowed because he was playing with the cat, who he argued with me about actually being there.

4. When PT gave him directions, he agreed and then did something completely different ... and even when he seemed to hear and understand, he wasn't able to get his body to cooperate.

-- Trust me, there are rationalizations that can be made for some of these things, but that first one? NO WIGGLE ROOM. He's not right. He's not tired, he's confused.

--- "He seems okay to me," is something you'd likely say if you saw him ... the man uses $5 words. He has a manner about him that exudes confidence and health. But HIS BRAIN IS BEING SQUEEZED SO BIZARRE STUFF COMES OUT OF HIS MOUTH. Just because he describes something using "multitude" and "numerous" and "exceeding" doesn't mean he's not telling you about credit cards and rain coats ?!? (which he did, tonight).

Even Less Sugar: back to that rock and hard place thing

Ian has had two appointments this week, including an MRI.

According to the pictures, he has EITHER a significant infection (still) in his brain OR the tumor has grown.

Here's the problem: the only way to monitor the infection and the tumor is visually via MRI. On contrast film TUMOR MATERIAL AND INFECTION LOOK THE SAME. We can't treat the tumor unless we're confident the infection is taken care of (and I don't know to what degree - 100% or "mostly percent" - fuzzy and vague). But we don't know what part of the blob is infection and what part is tumor.

So treatment remains the same: heavy antibiotics, monitoring blood counts, vitals, home health care and therapy, and WAIT.... *

For the infection to quell? for the tumor to swell? for the snow to fall ....

The doctor (Dr. Snazzy Stethoscope) said treating this thing is "an ART."  Not a science. Yeesh.

Fuzzy. Guessing. Trying. Waiting.

He also said Ian was an inspiration.

I tend to agree.

*(also blood clots and high blood pressure and tremor and weakness and confusion and dis-coordination and headache)

Seven Weeks Till Christmas?!

If you happen to need some Christmas gifts, a dear friend has set up this vendor sale to benefit our family.  Wine, Women and Fundraising Vendor Show.