Christopher

The latest round of tests (four or five now?) are still coming back negative for Acinetobacter baumannii.  But wait!  There’s now talk of a new bug cropping up in the results, though:  Pseudomonas aeruginosa.  Gah, you can’t make this stuff up.

Chris looks good this weekend, though – he’s alert, and he generally just seems more “with it” than he did a few weeks ago.  Not sure how to describe it.

Chris’s stomach still isn’t digesting food properly, taking much longer than it has in the past to process food.  I think this is still wholly related to being in isolation without the full PT/OT regimen that he’d receive in the therapy gym.

My dad is still looking around for a doctor to operate on his spine, another challenge we’re dealing with at the moment.  There are a number of techniques available from different specialists…  it’s a matter of narrowing down the choices at this point (evaluating the risk, recovery of function, etc.).  I really hope he can sort something out this coming week, because we need him back on the “team”.

HealthSouth RIOSA repaired their guest wireless access, so we’re able to do stuff on the Intertubes in the room again, for the first time since the nursing home!  Downloaded a “Wait, Wait, Don’t Tell Me” podcast, read him some Glenn Greenwald, watched a couple of YouTube videos, etc.:

On another positive note, the staff at RIOSA have been pretty good about getting Chris dressed and up in his chair in the morning.  It’s a HUGE help – it’s really nice to walk in, and skip straight to washing his face, brushing his teeth, shaving him, etc.

Chris was able to return to RIOSA yesterday afternoon.  He also has a new PEG tube – the folks at Methodist replaced the original one on Monday afternoon.

He was really alert while he was at Methodist, probably because they paused most of his medications.  I’m hoping we’ll be able to re-evaluate the cocktail of drugs at RIOSA, maybe allow Chris to remain a little bit more alert for therapy!

Methodist reports that Chris has no infectious diseases from their testing;  I’d asked the doctor there to write an order to discontinue the isolation at RIOSA – we’ll see what happens.

We had to take Chris back to the ER at Methodist Hospital last night.  He’s been having problems with his digestive tract the past couple of weeks, which culminated in vomiting and the nurse at RIOSA having to “decompress” (remove the contents of) his stomach around 9pm.  Chris was moaning a lot, and is probably in quite a bit of pain.  The doctor at Methodist called it “ileus“.

Chris is still at Methodist today, and they’ll be doing a CT scan of his abdomen at some point.  My mom thinks this has all come about from Chris being stuck in his room the last few weeks in isolation, thanks to the probable false positive for A. baumanii that was reported when Chris was at Methodist for the seizures.  Argh.  This isolation severely limits the types of PT/OT therapy Chris can receive – they can’t bring the equipment into the room, he can’t be folded over bolsters, stretched around, etc., which would help keep his bowels moving normally.

Subsequent weekly re-tests for A. baumanii have been coming back negative, but it looks like the isolation is permanent for the remainder of his stay at RIOSA.  Methodist cannot retract the results of the first test that caused the isolation, even if the sample was improperly collected.  It’s also strange that at Methodist, they don’t have Chris in isolation, nor are they following any contact precautions – apparently this stuff washes off the skin when you shower, so it’s not as serious as we thought even if Chris had the dang thing.  Inconsistent?  You bet.

Other bad news:  my dad damaged his spine while transferring Chris a few months back.  His condition has been deteriorating since and he’s going to need some pretty serious – and possibly risky – surgery soon.  Upper thoracic – it’s even affecting his fingers along with his legs and feet, and there’s constant, severe pain to manage.

Update: Chris is doing OK at Methodist Hospital.  They went ahead and setup a contact precaution bag on the door, so we’re wearing disposable gowns, etc., when we enter the room.  Methodist is continuing to hold everything delivered through his PEG tube (IV line for medications and fluids, with no food).  He was really alert yesterday evening, too (accompanied by the occasional blank staring, which is probably a small seizure).

So Chris was diagnosed with a mild urinary tract infection last week (after the seizures), but the results came back from Methodist this evening, and it’s a combination of Escherichia coli and Acinetobacter baumannii.

A. baumannii (and E. coli) are multiple-drug resistant, so they’re a bit more serious than your standard UTI.  Apparently Chris is the second patient at RIOSA who has been colonized by A. baumannii.  Apparently it’s going around at Brooks Army Medical Center (BAMC) in San Antonio, too.

Not sure how Chris came down with this, but the infection raised the risk of seizures (and perhaps contributed to them last week).  Argh.

Chris is now in kind of a quarantine situation at RIOSA until they can get rid of the infection (everyone entering the room has to don disposable protective gear head to toe,  and it gets discarded when you leave).

Hopefully the antibiotics they’ve chosen to go after this knock it out quickly – looking at the chart, you had 2-3 antibiotics you could try (the other 8 or so on the list were ineffective).

Update – April 12th: The first urinalysis sample retrieved at Methodist Hospital came from a very old (two weeks) drainage bag;  a subsequent “clean” re-test, collected at RIOSA, is showing negative results.  A doctor is going to have to get involved to make sure;  an incorrect diagnosis due to invalid test results could potentially put the entire hospital – patients, staff, visitors and all – in isolation for a lengthy amount of time.

The neurologist at RIOSA was slowly ramping up the dosage of a Ritalin-like psychostimulant, in an effort to prod Chris into a more alert state.  Seizures are an occasional side effect.

Chris started having seizures this morning after his first physical therapy session, and they’ve taken him to the emergency room at nearby Methodist Hospital.  It sounds like he’ll be at Methodist for a few days, so they can keep an eye on him until this settles down.  Apparently the anti-seizure medication can stop you from breathing, so they need to monitor him closely.  The neurologist says these seizures shouldn’t cause long-term damage.

My folks are at the hospital with Chris now – they said things are calming down.

Chris has been having mild, non-presenting seizures for a few months now (the kind that just disrupt concentration briefly, if I understand it correctly).  I think this is the first time he’s had “real” seizures since the accident.

Another long overdue update, and some great news to report!  The important news first:  Chris is back in an inpatient rehabilitation hospital setting, at HealthSouth RIOSA in San Antonio!  The departure from Gracy Woods Nursing Center here in Austin was a bit out of the blue last Monday, and I’ll certainly miss having him so close to my apartment, but it’s great that he’s now receiving PT/OT/speech inpatient therapy five – six days a week.

San Antonio brings back some really difficult memories and tears for us all.  It’s hard to drive down Babcock Road again, and realize you’re not headed to Chris’s old apartment.  Or driving past that Jim’s restaurant on Loop 410 at McCullough.  Flying Saucer on Huebner.  University Hospital and Billing Concepts always looming in the distance.  Why did this happen?  CHRIS!!!

My folks are staying at an apartment complex near RIOSA.  My apartment in Austin – our base of operations from the end of November until now – feels lonely without my folks and the dogs staying here.  It also feels strange that I can’t just walk over to the nursing home and see Chris.

We were able to do some neat things with Chris here in Austin since I last posted an update:  a visit to Taco Deli, our favorite weekend taco place.  A MetroAccess trip to Flying Saucer, our favorite pub.  Our first visit with a neurologist since we were booted out of the last rehab hospital…  this trip to the doctor was to relieve some of Chris’s muscle tone with Botox, and to have another EEG performed (the EEG results were better than those from September – the dominant frequency of one half of Chris’s brain is closer to normal).

Back to San Antonio:  My folks seem very pleased with RIOSA so far, and it’s good to be in the hospital setting again with a neurologist on staff to keep a closer eye on the brain injury.  Chris had a CT scan just this morning, for example!

Hmmm…  I suppose as we start the next chapter, I’d like to say thanks to the many dedicated people – nurses, aides and admin folks alike – at Gracy Woods II Nursing Center here in Austin that helped us take care of Chris.  I’d like to thank the therapists at HealthSouth in Austin, for trying new things with Chris (e-stim everywhere!).  And another thank you to the MetroAccess drivers, for that tremendous sense of freedom you gave me (“I can take my brother somewhere beyond walking distance from the home?  Sweet!!!”).

Thank you.

This time one year ago, during SXSW, Chris and I were enjoying a few beers and the great weather at Gingerman.  A band named “Jupiter One” was playing.  One of their tunes, “Countdown”, starts off:

“And so it begins…”

On Thursday, I took some photos of what’s happening in the outpatient therapy my parents setup for Chris at the start of the year.  Maybe it’ll make it a little more clear what’s involved with traumatic brain injury rehabilitation?

My mom and I took the train downtown to meet up with my dad and Chris (they rode down in the usual MetroAccess paratransit vehicle).

In the first three therapy photos, the speech therapist is continuing to encourage vocalization from Chris.  The pads on his cheeks are electrodes (neuromuscular electrical stimulation of his facial muscles).  The remaining photos are of a combined two hour physical / occupational therapy session, also involving the use of the different e-stim devices, various stretches and a standing frame at the end:

We took a trip down to campus last Sunday on Cap Metro’s MetroAccess service, our first trip just for the fun of it.  Felt pretty liberating to be out with students and folks just enjoying the sunny day in Austin…  I hope Chris enjoyed it.

It was also neat to find out our MetroAccess driver on the way down was a fellow motorcycle rider and a regular on the Two Wheeled Texans moto-forum!  Huh, small world.

Figured I’d make some time to post an update.

The HealthSouth outpatient therapy my folks arranged at the start of the month continues to go well, and it seems like it’s helping Chris.  It’s three times a week, with an hour of each discipline:  physical therapy, occupational therapy and speech.  Chris rides down in the nursing home wheelchair van (or soon, Capital Metro Metro Access when the nursing home vehicle isn’t available).  They are doing some pretty neat neuromuscular electrical stimulation on Chris’s legs, arms and hands to cause movement using his own muscles.  There’s also an auto ambulator “walking machine” on a different floor that we might get to use one day.

It’s hard to describe, but at night, there are a lot more flashes of “Chris” lately…  where you look into his good eye and see your brother, just like you remember him before the accident.  I brought his laptop to the nursing home one evening last week – the same laptop he was using at Starbucks on the night of the accident.  I loaded up some sample C# source code in Visual Studio 2010, and boy, was he interested!!!  (VS2010 is the development environment he sat in front of every day at work)

He’s going off into these trance-like states more and more, where his left eye slowly drifts upward and to the right.  The only way to snap him out of it is to tap him lightly on the forehead.  Definitely going to ask the neurologist when we visit him why this is happening more and more – hopefully the answer will be more insightful than the standard response, “must be due to brain injury”.

As my dad previously mentioned in his blog post at the beginning of the month, Corrie MacLaggan, with the Austin American-Statesman, did a good story on Chris that ran January 2nd:
http://www.statesman.com/news/texas-politics/state-budget-cuts-keep-brain-injured-texan-out-1157689.html

Charles Gonzalez, with KSAT-TV in San Antonio, did another story with a similar focus:
http://www.ksat.com/health/26615066/detail.html (Video)

In a nutshell:  Texas is one of a few states in the country that provides funding for intensive, inpatient therapy at a proper rehabilitation hospital (after your private health insurance company bails out on you, because you’re suffering from an extended duration catastrophic illness).  Due to statewide budget cuts, the department that runs the Comprehensive Rehabilitation Services program for brain and spinal cord injury had to put the thing on hold.

It’s a shame, because what happened to Chris could happen to anyone – it just ambushes entire families.  Chris was the only person involved in a motorcycle accident at Texas NeuroRehab.  The other patients, of all ages:  multi-vehicle car accidents, single car rollovers, strokes, aneurisms, or even one who was nearly beaten to death by some thugs (and survived with a serious and life-changing brain injury).

We’re in the new year and are determined to make this Christopher’s year! We’re working with an Austin rehab facility that we are feeling very comfortable with and have received many very positive leads and comments from readers of the Austin Statesman after Christopher’s news article ran in last Sunday’s paper.

We purchased a Reck Motomed Viva 2 for Chris for leg and arm exercises in his room and are working on purchasing a standing frame to get him up and on his feet. When Texas Neuro cut off Chris’ therapies, we, as a family, put Chris into a standing frame twice daily and he did very well with it. Chris will additionally get some “stand time” in an auto ambulator at the newest rehab facility we’re using. We’re still missing the hyperbaric treatment part of the original plan before the DARS cut but the creative thinking cap is on and there may be another way to make that happen. We’ve learned of some promising neuro stimulants that we’re looking into.

Chris continues to have health insurance coverage, albeit through United Healthcare, the folks that have given us a very difficult time. Chris’s medical insurance has been paid through April of 2012. But just because you have medical insurance doesn’t mean that you necessarily have medical coverage, even when it’s provided for in the policy. For example, Chris has a calendar year 60-day skilled nursing benefit in his plan but United healthcare, according to the current nursing home business manager, “unequivacally” denied it. So we had to pay for it. I’ve heard folks say, “take them to court,” and we’re moving down that road, but in the meantime, we have to pay it out of pocket until it gets resolved.

The bottom line is that for-profit healthcare is just that, for profit!