Christopher

Hope everyone was able to enjoy the holiday break, and “Merry Christmas!”, for folks that celebrate it.

We bundled my brother up on Christmas morning, wheeled him a 1/2 mile or so over to my apartment complex, and carried him up to the third floor in his wheelchair, so we could all be together for the day.  It was truly wonderful to have him home.

The nursing home provided all the medication and food in advance, to extend the amount of time Chris could stay in the apartment.  I think we managed 10am-7pm.  I put on a game of NCAA 2006 on the Playstation out of tradition – Chris would always kick my arse at this game when he was over at my aparment!  My mom made a fantastic Christmas dinner.  We were even able to lay Chris down in a real bed for his afternoon nap.  He didn’t have a single episode of sweating or anything the entire time (although the afternoon anti-spasticity medication knocked him out while we were opening gifts).

It has been a long seven months since the motorcycle accident, with lots of ups and downs along the way.  Christmas Day was one of the “ups”.

Showing Chris some NCAA Football on the Playstation, out of tradition

Mike and Chris playing a game of NCAA Football against each other back in 2009...

We’re going to break out the birthday cake this afternoon around 5pm at the nursing home, but folks are welcome to stop by any time before or after that.

Happy birthday, Chris.

29th birthday cake

Just a quick note – Chris’s birthday is tomorrow, Wednesday, December 15th!  We’ll probably have some cake and all that caper at some point in the afternoon, but any of y’all are welcome to stop by whenever is convenient – Chris will appreciate the new faces 🙂

Thanks!

Robert

(I posted about this a few days ago, but apparently I posted it as a new “Page” instead of a “Post”, d’oh!!!)

As you know, we had to move Chris into a skilled nursing facility. Chris is currently in a facility in North Austin. Not the best of situations given Chris’s age and needs but it is only temporary as we work our way through the next phase, which is, hopefully, more rehab. The family, particularly Mom and Robert, is continuing to do range-of-motion exercises with Chris daily and although there isn’t really anywhere to go in terms of being in the nursing home, Robert has signed Chris out for a “day trip,” to his apartment about a half mile down the road where he “stole Chris away for a couple hours of mental therapy!” Chris in his wheelchair and Robert pushing him to the apartment. And they hung out where else but the garage, where the “toys” are. Two motorcycles and an assortment of tools.  Not to mention the garage with all Chris’s gear and motorcycles. Of course, Robert putting Chris’s hand on the throttle of his Triumph and revving a few times is considered therapy! It stimulates the senses. We’re looking into outpatient rehab while Chris is in the nursing home. The nursing home is the interim measure after United Health Care stopped paying the bill while Chris was in Texas Neuro Rehab hospital. I didn’t know an insurance company could cut you off while you are in hospital but they can and did! Thank you United Health Care. I wish all the leadership at United Healthcare TBIs for Christmas!

Health care in this country should not be dictated by corporate profits and care should not be relegated to an insurance company in terms of decisions about who gets care and who doesn’t.

The next phase for us is state funding. Texas is actually one of the few states that does provide state funding for traumatic brain injury. United Health Care additionally refused to provide a skilled nursing benefit for Chris even though it’s in the policy.

We’re hoping for continued rehab and we will keep you all posted on our progress. Chris does have some on-command movement in his arms and legs/feet, albeit slight and with quite an effort on his part. But it’s there! Cognitively, we think Chris is doing well in answering our questions and we know over time this will continue to get better. Intermediate term, we want to move Chris to San Antonio for the next phase of intense rehab and Hyperbaric treatments along with nutritional supplements that are showing a great deal of promise for traumatic brain injury. Long term we intend to bring Chris back to Alabama to be at home with us. The University of Alabama at Birmingham has a TBI model system program at the Spain Rehab Center so we will be fairly close on an outpatient basis. Please keep Chris in your thoughts and prayers. God Bless you all. Stay safe!

From the Giles family to all of you, we are so blessed with family and friends and particularly people we have never met before that have come to Christopher’s aid in this forum. Your thoughts and prayers mean everything to us and we can’t thank you enough! We know we have a very long road ahead of us, and although a road less travelled, it is a road you have paved with well wishes for Chris and his family and we draw strength from your thoughts and prayers. We can’t thank you enough. Thank you all for your thoughts, prayers, donations, and caring. We are so grateful! God Bless. Jackie, Bob, Robert, and Chris.

To borrow from Stevie Nicks, “Just like the white-winged dove, singing songs sounds like she’s singing, … Ooh baby, ooh baby.”

See you for who you are, you are our baby. If the purity of the soul could be measured by the goal, you’d be our idol now, we love you so. You are our white-winged dove sounds like you’re singing, “help me baby help me to be. Everything that I can, I’ll be your heart I’ll be your man, you are my everything. You are my strength, my voice, my hands, my legs, my means, my ways, my song, my days, my nightime too. You tuck me in and keep me safe, I love your hugs, your warm embrace, you show the world to me.”

“I like my wingman’s touch, his laptop lights and sounds and such, the glowing screen of a fabled dream or is it neuron flow? It runs together it jumps, it sings, it falls and turns in cascade rings, you’ll never know how much it means. A synaptic glow, like lava flow, it sparks of colors bright and bold, it will never grow old it’s what it seems. It’s a dream. ”

And from Chris’s voice a sweet refrain, let us hear its softened words, “for all you do. I love you!”

Know at night that when I dream, I’m whole.
Sirch Selig, “A Tale Of Love,” Dec 2010

Sorry folks for taking so long to post an update.  We’re settled in at the nursing home, which is about 1/2 a mile from my apartment complex – walking distance!

We’ve had a few of the usual hiccups with nursing and the techs.  I don’t believe the staff at the nursing home are generally used to a young person that is 100% dependent for care, fed through a tube, not able to assist with transfers, etc.  I think we can work around this, though.

We wheeled Chris over to my apartment complex last Saturday, first time he’s been back since the end of April!  My apartment is on the third floor, but the garage is downstairs and “wheelchair accessible”…  we hung out and looked at motorcycles and tools for an hour, before wheeling back over to the nursing home.  Mom also brought the dogs down to the garage for Chris to see.

I spent an FMLA day at the hospital on Wednesday, and was generally satisfied with things.  The techs were generally available to help with cleanup, and most of the nurses have been OK.  Need to occasionally remind folks to keep their hands clean, not put the end of the feeding tube in filth…  these are common-sense “fixable” things, though.  This place is so close to home and to work, that I’ve even been able to stop by over lunch…  whoa, so much closer than Texas Neuro in south Austin!

I’m not sure the nursing home is going to be able to help Chris much in terms of therapy.  My folks are continuing with the Dannon yogurt feeding by mouth – speech therapy – and can usually can get through about 4 ounces of the stuff before it becomes too runny.  We’re doing the range of motion stuff in the morning with legs and arms, but they don’t have the right standing frame for Chris in the PT/OT gym (so no neck exercises yet – it’s a lot easier to do these in the standing frame).

As always, visitors are welcome.

I suppose that’s about it for now.  I think I’d like for us to take Chris back to University Hospital at some point for a follow-up appointment with the original neurology folks, maybe do another round of CT/MRI imaging?  Dunno how that’s going to work out in terms of logistics…  I don’t think the nursing home is going to handle transport to SATX.

(more random thoughts as I think of them!)

Ok, looks like Chris is being moved to the nursing home at 2pm today.

And thanks to the folks at Texas NeuroRehab, UnitedHealth has declined to pay for this skilled nursing care (Texas NeuroRehab changed Chris’s prognosis from “making slow progress” to “vegetable” when his LTAC care benefit ran out with UnitedHealth in mid-October).

Ok, it now looks like Chris will be headed to a place that’s within walking distance from my apartment complex in north Austin.

Still a few more details to work out…  I’ll post another update when we know for sure.  Also found another video of Chris from back in 2007 that basically sums up our friendship with laughter:

http://www.youtube.com/watch?v=LMuo2tIRxM4

Around this time one year ago, Chris and I were singing Texas Fight, with our pal Dan Waldrep, up in the rafters at Kyle Field, in College Station, Texas.

http://www.youtube.com/watch?v=JgXlkXtRjcQ

We’re still at Texas Neuro somehow, due to difficulties finding a skilled nursing home that’s safe and will accept Chris as a resident despite his age (too young).  It’s looking like a place in New Braunfels, Texas, but who knows – various hospital and nursing home administrators are – understandably – out for the holiday weekend.

Give your loved ones an extra bear hug this Thanksgiving, for sure.  Every moment you spend with them is precious.

Hook ‘Em Horns.