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"We are what we repeatedly do. Excellence, then, is not an act, but a habit." ~Aristotle

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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?


Friday, November 20, 2015

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).

Wednesday, November 4, 2015

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)

Sunday, November 1, 2015

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.

Saturday, October 24, 2015

Even Less Sugar: Caregiving Day One: Homecoming

I am not complaining. All of the things worked out fine, and we are fine, and Ian is home. I just wanted to give you a glimpse.

Yesterday: Laundry. Making the hospital bed that's in the living room. Potty chair and wheel chairs are ready to go. Bath chair arrives (thanks, friend!).

Mom meets me at the rehab center to get Ian. This round, I'm giving two types of antibiotics at home. One requires 4 syringes (2 saline, 1 heprin, 1 med, which needs to be kept cold and removed from the fridge 30 minutes prior). The other requires a very slow push, so it uses a giant syringe and a motorized pump. I receive a demonstration before leaving the hospital.
Freedom60 Pump

At 1:30 p, the school calls: Ezra is having "difficult bathroom issues" and needs to be picked up. We wheel Ian and his walker to the car, and with some difficulty load him up. Then we head to the school and get Ezra, who is "uncomfortable" but well enough. We cram in and head home. The home health nurse calls to say she'll be at the house around 5p.

IV medicine is due at 4. It won't be delivered till 4:30p ... okay. There's wiggle room. We're supposed to wait for the nurse to arrive to do the first home dosage.

The meds show at 5p. Still okay. I unpack the refrigerated box and bag of boxes of bags and meds and supplies and organize them a bit.  I realize: no magic pump.

Maybe the nurse brings it with her? Since I haven't been "checked off" on using it?

I should have known better, based on last time: meds are one folks, care is another.

Nurse shows at 6p (we're now at 2 hrs past due): no pump.

She calls, they're "sending it out," which means we'll have it by 9p. She sticks around for the meds I CAN do, and we do some math:

The antibiotics are on an 8-hour schedule. They are now staggered, 3 hours apart, and both have started later than the schedule. This means we need to fuss with the dosing times, using that aforementioned wiggle room to get them lined up together and properly spaced. It looks like this: (C and V being the two types; remember that "V" uses the pump, and therefore takes 1.5 hrs to run, followed up by another 2 syringes -- saline and heprin)

6p  C
9p  V (I want to sleep now, but I have to wait 1.5 hr for the pump to be done and do the other 2 syringes. Also, the second home-health nurse is here.)
-potty break for Ian somewhere around midnight-
2a  C (yup, this is not a pleasant wake-up)
-somewhere here, in a haze, is another bathroom trip. I think.
5a  V (wow, it's amazing what a dope I am at this hour, after a few hours of semi-sleep on a squishy couch. I manage to start the pump and set my alarm, fall asleep, get back up and disconnect, go back to bed, start to fall asleep, only to realize I forgot the 2 follow-up syringes. Back to sleep at 7.)
11a C (nurse is here! just to be sure I've got this. And I do ... although this is the easy one)
12p V (like a boss. Is it bedtime yet?)
7p C/V (they're both together now! yay! but we're not done fussing yet ...)
3a C/V (yup, that sucks - I'll either need to go back to bed for an hour or stay up till 430 ...)
10a C/V
5p C/V
12p C/V
8a C/V (the golden hour! now we can go back to the schedule we had at the hospital, 8 4 and 12. Much more manageable).

It's not that any of the things are difficult, or particularly stressful (although being apprehensive about being 5 hours late on a dosage was getting there) -- I've gotten "over" my extreme paranoia about screwing up the sterilization and antibiotic administration -- it's that all of these things are swirling around in my brain. They are all things to be considered and done, and that's outside the slow, arduous trips to the bathroom, the pill regimen, meals, kids, general house-type things .... and starting this week, the cadre of therapists who will be calling (phone calls! blech!) to arrange -- and then showing up to do -- speech, occupational and physical therapy.

Okay: maybe I'm whining. Just a little.

Monday, October 19, 2015

A Little Sugar: Sweet Times and Home Sweet Home

So, this happened:

On Saturday, after a full day's rest and a bit of administrative generosity, Ian got to visit with buddies from his Navy pilot days: Bluetails VAW-121 descended on a local restaurant to swap inappropriate stories and show their appreciation for "Rev." It was a MAGICAL night ... for Ian, 1. to be out of the hospital after two months straight, 2. to reconnect with brother-like-guys he hasn't seen in 10 years, 3. to exercise his brain with good memories and conversation. For me, it was like no time had passed ... it felt like a typical squadron function. My non-social self was completely at ease with the old crew, and it felt warm and fuzzy. No pity, just encouragement. It was like Normal Town for a few hours. (BTW, I had nothing to do with planning the event other than to get Ian dressed and to the restaurant. Thanks to all who coordinated this special night, and went out of their way to attend.)

You DON'T wanna know what was so funny.
And as if Saturday didn't give us enough of a much-needed high, today we got the news:

Ian comes home Friday.

I'm taking a risk, putting it out there in print this soon -- as I've noted before, things change, we take steps backward, drama unfolds. But I feel pretty good about this impending jailbreak.

What this means: Ian will receive in-home therapy from several specialists, likely followed by out-patient rehab. He will sleep on the 1st floor until he is strong and confident on the stairs. He will, of course, be open to visitors, if they are cootie free and have checked with me.

I am the wizard. The gatekeeper. The troll. Dr. David Banner ("You won't like me when I'm angry"). Get your flu shot, keep your germies at home, and do not "stop by" or "pop in" unannounced (this goes for family and clergy and the President, if he is so inclined); remember, his bed will be feet from the door -- no chance of your arrival not waking him. A call, email, Facebook message or text will let me protect his rest, his family time, and my sanity.

Lots more hard work to do. New phase, new challenges. But there has been triumph.

Thursday, October 8, 2015

Even Less Sugar: Rehabulous

weaving cones in a walker. like a boss.
First week of rehab is in the can. 

It's quite an adjustment go to from the buzz of the ICU floor, with much staff and sterile and beeping and always poised for the next specialist's visit to a chill, quiet, open hallway, no monitors attached. It might seem like a big relief, but it takes (me) a few days to breathe easy and not worry that he's not receiving enough medical attention. 

He's close to home! Yay! That's a fantastic, fabulous thing. Except it does raise some questions and some guilt: how much time should I/do I need to spend at the hospital with him? He's working hard ... does he need/want a cheerleader in his therapy sessions? Shall I wait for him to be done and then come to see him? If I'm not here every day, does that mean I don't care? (obviously not, but that's where the guilt comes in). Does a "pop in" visit "count" or should I stay for a few hours? How often should I bring the kids in with me? 

I was disappointed two days ago ... I watched him struggle with his tremor. He was pale. He said nonsensical things... he was too tired mentally to converse in a "meaningful" way. He was very cold, in a very warm room, and several coughs led to a raging headache.

It was depressing. I couldn't bring myself to come in yesterday. 

I kept reminding myself: He did this before. He relearned to walk. At one point, he sat with drool hanging out of his mouth, unaware of it. This is not that. We'll get there ... Be patient.

rehab snuggles (it was PJ day at school)
Audrey makes eye contact. So feelings.

But then I'd think: Yes, but this time he's altered going into rehab. He's not 100% to start ... what is baseline now? Is "generally confused" going to be the way things are? Is he ever going to show interest or patience in the minutia of conversation? Have we transitioned from best friends to caregiver and patient?

What happens when he's released from rehab? That puts me back into nurse mode again. I am the one to determine "how he is" going forward. Pressure.

I spent most of a day arguing with myself, dealing with my own demons. 

Today I steeled myself to get over it and spend time with my partner, my friend, my love. 

I was rewarded with a More-Ian Ian. 

Yesterday I felt defeated and rotten. Today, we can do all things. 

It's different by the day, folks. This journey we're on ... it's a bumpy one.