Christopher

We’re at Methodist Hospital a couple of blocks from TIRR where Chris underwent surgery this morning to implant a Baclofen pump, which basically meters (pumps) Baclofen directly into the spine to help with spasticity (tone). It is expected to help considerably with range of motion and improvement in therapy outcome. We hope to stay at TIRR through the end of the month and then return home for a period and then come back to TIRR again.

TIRR has been great and we’re very happy we got the chance to spend some time here and look forward to coming back.  Chris’s doctor is working hard on the neuro medical component to wake Chris up a bit as the goal and we’re seeing an alertness that wasn’t there before!

Thanks for your thoughts and prayers. They mean the world to us. More to follow as the Baclofen starts working.

(Robert:  I figured I’d also add a link explaining what Baclofen is:  http://en.wikipedia.org/wiki/Baclofen)

As my dad previously posted, they actually DID make it to TIRR in Houston over the weekend of September 17th – no false starts this time!

I was impressed by the folks at TIRR during the previous two admissions evaluations…  and continue to be impressed by the place.  In fact, I’m only disappointed that Chris couldn’t get into TIRR sooner.

There were extremely hard-working folks at Texas NeuroRehab and HealthSouth RIOSA, but perhaps too few personnel for too many patients.  The folks running TIRR seem to have nailed this.  Everyone:  the techs, the nurses, the physicians, the therpists, even the adminstrators, all seem globally excited to be working at TIRR.  Perhaps a combination of an overall good work environment, and a much lower staff-to-patient ratio.

The therapy is a combination of things we’ve seen before and some new, novel things (music therapy!).  And much more on the diagnostic side to determine actually where Chris is in terms of how he experiences the world.  For example, TIRR might finally confirm his glasses prescription in the next week or so.  Every other facility wrote it off as an unnecessary detour, so we’d reluctantly stuck with his ‘found-in-a-drawer’ prescription from before the accident.

Chris unfortunately had two seizures in the evening this week, but the staff were on it quickly, naturally upping the dosage of the anti-seizure medication, and temporarily suspending the neuro stimulants.  The neurologists seem eager to get Chris back on the stimulants, though, working toward a dosage that is just shy of the seizure mark.  The stimulant somehow makes it easier for Chris to again recognize “the right” – ie:  turning your head to the right, moving your eye to the right past center line, etc.  I noticed this effect last year at RIOSA, but after Chris’s first seizure there, the neurologist completely backed off (most likely because by himself, he couldn’t monitor Chris closely enough to guard against further seizure activity).

My folks have setup shop (with the dog!) in an RV park about 5 miles from TIRR and are taking turns two weeks on, two weeks off between Houston and home.  I’m trying to make it to Houston when I can, without leaving things on fire at work.

So that’s it for the moment.  I’ll definitely try to keep this a bit more updated now that Chris is at TIRR – stay tuned!  I’m hoping for lots of small, incremental improvements.

It looks like we have accomplished another milestone, however, I don’t want to speak too soon but it looks like we are going to get to go to TIRR afterall. This is great news that we’ve been waiting on for a long time. I will confirm this Wednesday but as of today, it’s a GO! We’re looking forward to it and TIRR has a great reputation for brain injury treatment and rehab programs. We’re packing up the RV and will be hitting the road soon. I’m looking forward to not only the physical rehab but also the opportunity to do a comprehensive medication adjustment to see if we can’t get Chris on something that will help him in terms of reconnecting those neurons and get his motor movements going again! Wish us luck. We’ve waited a long time for this and are really looking forward to it. We have a long road ahead of us still. We’re under no illusions in that regard but everything we get helps! Just an update for everyone that’s following this. I know I haven’t written in a long time but just wanted everyone to know about TIRR. We’re very happy! Wish us luck! Bob Giles

While we’re still waiting for TIRR, I figured I’d post some photos suggesting what it’s like for a family taking care of an individual with a severe traumatic brain injury.  I say “suggest”, because there’s honestly no way to explain, or accurately convey the amount of effort involved.

This particular day, the routine began at 2AM, turning Chris for the first time in the night.  The goal is to prevent bed sores and to keep fluids from building up in his lungs.  No accidents, and the urinary drain bag looks OK, so back to bed.

For a break, my parents combined the usual second turning (~4AM) with the 6AM morning medications,  enteral feeding and suppository.

10AM.  Time to clean up the results of the suppository, get Chris shaved, wash his face, etc.  Every other day also involves a full-body bed bath.

After putting Chris’s clothes on, my folks transfer him to the wheelchair and put him on the motoMED for an hour.

Noon, and it’s time for the midday enteral feeding, yogurt drink and medications.

Chris has an accident at some point, and my folks transfer him back to bed around 1:30PM to clean him up and put a new brief on.  The process takes about 30-45 minutes when it’s all said and done, which gives Chris a short hour or so before his proper afternoon nap.

Where do you source all the stuff needed to take care of a TBI patient?  You buy it from discount medical supply companies.  You pick up the product / part numbers over time from various facilities, building up a list of things that work.  Urinary drain bags that don’t back up.  Condom catheters that don’t come off as often.  Foam cleaners, disposable towels and creams that prevent rash and speed up the job of changing Chris.  Patient slings that wash easily, that Chris won’t fall out of, etc.  A lot of logistics you don’t even think about, and naturally there’s no manual.

Afternoon nap is over at 5PM.  My folks transfer Chris back to his wheelchair, where he’ll be until bed time.  It’s also time for evening food, two cans of Jevity 1.5 kCal.

This Saturday evening is a little different.  My folks’ friends are getting together at a local Tex-Mex restaurant, and we’re going to bring Chris.  It’s certainly a welcome outing for everyone, definitely a salve for the cabin fever that builds up.

Dinner is a success.  The laughter and retelling of stories is therapy.  We take Chris home in the wheelchair van.

Chris goes to bed a little later today, around 10PM.  It’s time for evening medications.

My folks decide to go back to the normal twice-nightly turning schedule, which begins at 1AM this time.

And so another day begins…

I’ll try to post a multi-month roundup at some point, to kind of summarize what’s been going on since January, but in the meantime just wanted to post something to describe that Tuesday two years ago when I learned about what had happened to my brother.

I was about to head off to lunch;  it felt like any other Tuesday.  One of Chris’s coworkers sent me a message on Facebook, wondering why Chris never showed up to work.  Texted Chris, called him, no answer.  Chris’s coworkers quickly discovered the WOAI news story about an accident involving a motorcycle the night before, and determined the motorcyclist was indeed at University Hospital…  and most likely Chris.

I can’t describe how badly I started shaking when I saw the photo from the scene of the accident.  It was definitely Chris’s bike.

I couldn’t get a hold of my parents – they were already in the air, flying to Texas for a weekend in San Antonio as a family.  Memorial Day weekend.

Chris’s coworkers gave me a number for a nurse in the STICU at University Hospital, I told her I was on the way.

I couldn’t control the shaking as I wobbled the two mile motorcycle ride home from work;  the drive to San Antonio from Austin was a blur.  It rained torrentially all the way there.

It’s been two months since my last post.  Another birthday for Chris, another Christmas holiday gone by, a new year.

Chris is now 30 years old.  I think back to my 30th birthday almost two years ago when Chris came up to Austin;  what a completely different world – we had no idea how much time was left.

My parents continue to do some basic PT/OT/speech therapy with Chris every day while we wait for the possibility of going to TIRR in Houston.  He’s in great shape health-wise, thanks to our mom -I’m not sure how she’s still going at this sprint pace.

Unfortunately, there’s still no timeline on when / if the move to TIRR will happen.  Hopefully soon?

DKR Stadium, Section 14, Row 1

My mom and I were able to take Chris to a Texas football game this past weekend, which was pretty special given the stars that needed to align to make it possible.

The UT athletics office very happily converted my two staff football tickets, along with a third ticket kindly donated by one of my co-workers, into three wheelchair-accessible seats.  We weren’t quite sure how it was going to work out, bringing a large tilt-in-space wheelchair into a stadium of 100,000 people…  but it did, and it was fantastic to have my family with me at a game again.  The event staff and UTPD folks working the stadium were also incredibly friendly and helpful (I suppose they could tell we had no idea what we were doing).

Win or lose, this outing to Austin would have been a great time…  Texas handily beating Texas Tech, though, was icing on the cake.

There’s also nothing more powerful, more soul-stirring than singing The Eyes of Texas at the end of a game with your brother, your fellow Longhorn, your wingman, your best friend.  The good times come rushing back through the fog of the nightmare, if only briefly.

The 2005 Texas A&M game...

UT Co-Op, San Antonio

Still not sure if we’re going to be able to get into TIRR yet.  Luckily, my mom was able to extend the lease on the apartment in San Antonio another month to buy us some more time.

Before the motorcycle accident, I remember Chris always talking about going to the “The Quad” with his girlfriend.  He’d planned on taking the whole family there for Memorial Day Weekend in 2010, actually, but it never happened – the motorcycle accident was mere days before we were all supposed to meet up to celebrate.

At "The Quadrangle" on Fort Sam Houston in San Antonio

My dad has taken Chris out there a few times over the past two weeks, and we finally went as a family this past weekend (after a trip to the UT Co-Op in San Antonio to get Chris a few new Texas shirts).

The Quadrangle on Fort Sam Houston in San Antonio is pretty unusual, unique and interesting.  I wish we could have gone there with Chris before the accident…

There continue to be slight improvements:  Chris, out of the blue, seems to be drooling noticeably less now than in the past.  He also continues to vocalize more and more, and my folks says he is getting better and better at answering questions with head turns (yes / no questions).  I’ve noticed tears a few times, too – and no, they are not tears from eye irritation, but authentic tears of sadness.

Well, we don’t know what the next step is going to be yet.  I hope it is TIRR in Houston, but I’m not sure how soon that will happen.  In any case, we need to be moved out of the apartment in San Antonio at the end of the month, so something will certainly happen this week (“Plan Z”, perhaps?).

My mom practicing head turns on command with Chris. Dad is off to the right, cheering Chris on.

RIOSA terminated Chris’s outpatient OT/speech therapy at the beginning of September, so we’ve kind of been idling at the apartment since then.  My folks have continued some of the therapy themselves – practicing head movements every night, practicing eye movements, etc.  We also had a really nice Evolv XT standing frame show up from the medical supply company last week.  A bit late in the game, but we used it this past weekend with Chris for 30 minutes (my mom kept a very close eye on his blood pressure, of course).

Chris in the standing frame

My folks transitioned Chris over to a regular GP doctor (from the doc at RIOSA).  The new guy discontinued some of the medications Chris has been on since the start of this whole thing (blood pressure medications that began at TexasNeuro and anti-cholesterol medications that were probably a mixup between my dad’s medical records at RIOSA ?!?).  Chris no longer needs weekly INR level checks for Warfarin / Coumadin, which means no more Monday visits by the home healthcare nurse.  Cool.

Chris hadn’t had any imaging of his head in quite some time;  after much wrangling with UnitedHealth, his neurologist in San Antonio, Dr. Philip Onghai, was able to have an MRI arranged.  The scan shows some loss of mass in several parts of Chris’s brain.  Chris’s original neurointensivist from University Hospital, Dr. Augusto Parra, says this is an unfortunate and unavoidable component of traumatic brain injury…

I suppose on the subject of neurologists, Chris was also able to come up to Austin to see Dr. David Morledge for a second round of Botox injections in various muscles (the goal being to ease muscle tone before initiating an intensive PT/OT therapy program).  My folks said Morledge was happy to see Chris again (the last time was in February, while we were still at the nursing home).

Two days before the accident: just having a beer with my brother at Flying Saucer in San Antonio. The nightmare looms, we have no idea.

The wheelchair van is great! We’ve managed to take Chris out on some trips to San Antonio’s Flying Saucer pub, along with a short excursion out onto the Leon Creek Greenway.  It’s great to get Chris out of the apartment, and even better to go to some familiar places from Chris’s life before all this began.

That’s it for now –  I’ll post more when we know for sure where Chris is heading next.

Interstate 10 headed back to San Antonio from Houston

A brief update:  with the new wheelchair van, we were able to take Chris to see the folks at Memorial Hermann’s TIRR (“The Institute for Rehabilitation and Research”) in Houston today for an evaluation.  That’s about a three hour drive from San Antonio, for those unfamiliar with Texas.

I’ll post more later – don’t want to jinx things – but the two doctors we spoke with gave me a very good feeling overall.  Unprompted, they mentioned things like a team of specialists that would conduct further evaluations to determine the state of Chris’s vision and hearing (something we’ve asked multiple neurologists about without any luck so far).  Wow.

Fingers crossed.

Chris is knackered from the trip there and back.