Christopher

Our second family beagle, Nuala, died quite suddenly Saturday morning, September 21st, 2013, at my folks’ house in Alabama.

Looking back through photos of Nuala – and her mother, Molly – reminds me of much happier times.

The more recent photos are also a reminder of the struggle that has been the last three and a half years.

I can remember picking the dogs up at the kennel in Alabama with my dad a week or two after the motorcycle accident.  Molly and Nuala were thrilled to see us, their wagging tails lifting my spirits momentarily until the gut wrenching pain and realization of the true circumstances returned.  The fifteen hour drive back to San Antonio.  The month in Chris’s apartment, our command post of sorts while he was in the STICU at University Hospital.  Packing Chris’s entire adult life into boxes…

The shady RV park in south Austin, where my parents lived for several months while Chris was at Texas NeuroRehab.  Having the dogs at my apartment in north Austin, while Chris was at the nursing home.  Back to San Antonio, again in an apartment, near HealthSouth RIOSA.

Losing Molly.  And Nuala spending weeks looking for her mom.  Closing out the RIOSA chapter, and the return to Alabama.

New hope, the trip to TIRR in Houston, Nuala always along for the ride.  This time in an RV park near the medical center.

Molly and Nuala were kind of a connection to the past, and a connection to how things were before the accident.  Taking them out for walks, in all these unfamiliar places, was head-clearing and therapeutic:  much more for my benefit than theirs.

I brought Chris’s wheelchair down to where my folks buried Nuala, along with Molly’s ashes from San Antonio.  I could swear I saw a tear welling up in one of Chris’s eyes.

1998 – 2013

A quick update. Chris had to go into hospital for about four days two weeks ago, unnecessarily, as it turns out. What a palava! We took Chris to see his family Doctor for a very low grade temp. Something was “off’ a bit and we worry about siezures. Seizures, it seems, can be triggerred by anything! We suspected a urinary tract issue and the Doc took a urine sample and sent it off to the lab. We didn’t hear anything back for about a week and a half when the doctor called the house late on a Friday afternoon asking how Chris was. We told her he was fine and her reply was, “No he’s not! He has an infection that I can’t treat with oral antibiotics and he needs to be in hospital on intravenous antibiotics!” “He already has a room at Crestwood hospital. Get him down there and checked in!”  The antibiotics they put him on are very strong antibiotics and, apparently, are very hard on your kidneys!

So off we went to Crestwood hospital. This was our first experience at Crestwood, one of two hospitals in Huntsville, Alabama – three if you count the new hospital in Madison that’s also affiliated with Huntsville hospital. We did NOT have a good experience at Crestwood. It’s a Doctor-owned hospital, they give you a list of about fifty doctor/owners when you check in…….hmmm, cheap bastards interested in the bottom line it seemed more than adequate care for the patients. oops, I didn’t just say that about Doctors did I?

Of course, Chris is not your normal patient and requires supplies that are a bit diferent than most, condom catheters, urinary bags, feeding bags, etc. But the supplies they used there were about the cheapest you can get – we know, we buy them for home use all the time. We ended up supplying the hospital with supplies while he was there! Long story shortened, we won’t be going back to Crestwood anytime soon! After four days of being there, they ran another urine sample and the Doc said it came back clean (a different Doc, not the weekend staff), and wondered why we were there!

Good news for us though. It took us about a new York minute to get out of there! We subjected Chris, as it turns out, to an apparent unneccessary hospital stay! On the upsaide, better that he didn’t have anything wrong with him I suppose thatn the other way round.

The take-away was that we now have our own sterile urine collection jars to take with us to his family Doc so we avoid taking a sample from a urinary bag that’s been on for awhile. They normally last about a week, give or take. But it obviously needs to be a “clean catch,” or you’re liable to grow all kinds of nasties in the sample that will cause a misdiagnosis.

Chris is fine (in terms of the urinary tract issues) and we’re at home and back to our abnormal “normal” routine.

Still working on the logistics for hyperbarics in New Orleans but I’m having a knee replaced here in a few weeks so that will postpone the New Orleans trip and hyperbarics for a few more months. Getting old kind of sucks! As the saying goes, “if I’d known I was going to live this long, I’d have taken better care of myself!”

When you discharge from a hospital, “the system” wants to make a few more bucks by offerrring “home health.” Since it’s free, or I should say no cost to us as we all pay for it in our taxes, we take it because something is better than nothing, although, the therapists they send out really don’t do much! We did get a good lead for home help from the social worker they sent out and the Physical Therapist (the most helpful of all) lead us to an Alabama brain injury resource site that his wife has been involved with and we have also attended a monthly brain injury meeting at the local Healthsouth facility where you get to meet other brain injury survivors and care takers and change stories, ideas, gain some leads here and there, etc. So although we were in hospital unnecessarily, it did produce some posuitive results by way of the social worker at Crestwood who started the ball rolling that led to this lead that led to that lead and so on. Funny how it all works out sometimes!

I’m working on transfer of guardianship for Chris to the State of Alabama (from Texas), another whole different set of legal details and issues, a hassle but a necessary hassle! I remember the first week after Chris’s accident in San Antonio. I called Met Life as they held a disability policy through Chris’s work and the very nice lady on the phone (I’m being facetious) told me she couldn’t talk with me because I was not Christopher. As I explained that I was contacting them on Chris’s behalf since he was currently in intensive care fighting for his life, she asked me how I knew they had corresponded with Chris, to which I replied, “I opened his mail.” She responded with, “that’s illegal!” Of course, the reply they were looking for had a suspense on it that Chris obviously was not going to meet (and I was afraid the policy would be voided without a reply within their time limit). Doing what you would think is the right thing considering the circumstances resulted in some Beeee-atch on the other end telling me off for opening Christopher’s mail! God Bless her little heart as they say in Alabama! And it seemed everyone I talked to on Chris’s behalf (except the hospitals) wanted to know if I had a Power-of-Attorney to act on Chris’s behalf. And of course the answer is no because a power-of-Attorney is something you grant to someone else and of course, Chris was in no condition to grant anything! So off we go down the guqardianship route and some facilities still wanted a Power-of-Attorney even though I told them I had legal guardianship because they didn’t know what guardianship is or how you get it or what it means. Note to self (and I still haven’t given power-of-attorney to mom and Robert), give Power-of-Attorney to someone because it’s too late after an accident, or stroke, or other life-altering event!

OK, enough rambling. We’re out of the hospital and back home! Chris is doing well. He smiles a lot more now and it melts your heart when he does. He’s such a wonderful person and still finds a way to smile even in the face of his situation. He’s a great young man!

Thanks to all for keeping Chris in your thoughts – it helps more than you’ll ever know!

God Bless.

Dad

The morning routine around the Giles’ house is a bit different than most. If it’s a weekend, I try to give Mom a little break by taking care of Chris in the morning around seven-ish, at least getting him turned and getting his food going (of course, the dog gets us up to go out around 5:30 or 6:00 and then wants to be fed). The routine consists of repositioning Chris in bed, off his side and on to his back, telling him good morning, we love him, giving him and hug and kiss and telling him how great he looks. Chris usually does a morning stretch and then verbalizes a bit as if to say, “leave me alone. Can’t you see I’m trying to sleep!” And he usually has a little “bed-head” going on. He looks great!
We get the food going (two cans of Jevity 1.2) and morning meds, turn on NPR so he gets to hear a bit of what’s going on in the world and then we usually have a cup or two of tea while Chris is having his first feed of the day. I usually go back to bed while he’s eating and Mom takes over giving meds, shaving him, washing his face. He hates getting his face washed. If it’s a bath day, the bath comes next beginning with a shampoo and moving on from there. When we finally get Chris up, he’s fully dressed, has been fed, and looks great! Mom, mind you, is doing all of this on her own during the week!
Chris goes on his exercise bike (Motomed) every morning for an hour. We wheel him up to the machine, strap his feet into the feet pads and then off he goes on a spin class as Mom calls it for about an hour – usually about twenty kilometers worth. On weekends we’re usually having breakfast while Chris is on his bike. As a nice sidebar, I’ve gotten a full Irish three weeks running now! The works, eggs, Irish Sausages, bacon rashers, black and white pudding, fried tomatoes, toast and jam and, of course, a glass of orange juice and tea! Yum!
Chris gets wheeled into the sitting room after his motomed session and we usually put the television on, usually PBS with the beginning of the Saturday morning line up of DIY shows. Mom was off doing the morning chores this Saturday and I had left the room for something. Chris will sometimes pull his head out of his headrest and it results in his head lying forward on his chest, looking down. When I walked back into the sitting room, there he was with his head lying forward on his chest, having pulled his head out of the head rest. It was the top of the hour and as I walked over to lift his head up for him I noticed the “Create” program was just changing to a new program. As I lifted Chris’s head up I said, “Chris, what are you doing?” Glancing back at the TV I went on, “how can you watch “Sewing with Nancy” with your head on your chest?” Chris gave me the biggest smile I have ever seen! And from both sides, not just the left side that he favors when he normally smiles! I pushed a bit with, “how can you learn to sew if you’re not looking at the TV?” His smile got bigger! He was really enjoying my teasing him and it melted my heart! I gave him a big hug to show how happy he had made me (and to hide my tears), but I was absolutely overjoyed! We’re on our way to good things! That’s the normal ribbing we would have done before his accident. And it’s great to know he still enjoys it!
This Monday morning as I left for work, as I usually do, I go into Chris’s room to tell him goodbye and wish him a good day and to remind him to “practice” moving head, arms, legs, feet. This morning as I grabbed his left hand and gave him a hug and told him to remember to practice movements, he pulled my hand up to his chest with his left arm and then put it back down to his left side, giving a slight “whew” as he completed the movement! He made my day – again! He wanted to show me that he can move and has obviously been practicing, or at least, thinking about the movement. He puts me on cloud nine with the progress knowing that we’re moving in the right direction and that he’s there and trying hard! I feel like we’re on the verge of good things. Chris gives us hope when you least expect it! In the midst of his great personal tragedy and adversity, he finds the strength to gives us hope and to continue fighting! What a lovely young man and what strength of character!
Hope you all have a great day too!
We’ll get there!
Dad

Hi to all. It’s been awhile since we’ve posted anything and I feel like we’ve let everyone down a bit in that regard. Of course, Chris is back in Alabama with Mom and Dad and our next step is Hyperbaric treatment with Dr. Harch in New Orleans but we haven’t worked out the logistics of making that happen. It will require renting a place to live for two months while we’re there to include hospital-type bed for Chris. It takes 40 “dives” in a hyperbairc chamber to see permanent changes in terms of the treatment and at the rate of one per day, five days per week, it’s going to take about two months to get 40 “dives” completed. So that’s the next step. Chris has had a couple of seizures here at home in Alabama since we returned from TIRR so his seizure threshold has apparently been lowered substantially. it seems the more you have the easier it is to have a seizure. We’re not real happy about that but Chris, in spite of the seizures, looks very good. Mom is keeping him very healthy and he is smiling much more now. It just melts your heart to see Chris smile. Mom gets him to smile more than I can but occaisionally he’ll smile for me when I’m doing “silly” things with him like singing stupid kids songs or generally acting the clown (in other words – being normal for me)! Hah! But there’s nothing like a smile from ouir Chris to make your day! The switch devices that we got from TIRR are good but we don’t use them as much as we could and, for now, we only have “Yes” and “No” programmed in for the ability to answer general yes and no questions. Although, Chris answers yes and no anyway without the switches so, if we can work in some alternative options like selections of music, etc, it might be more helpful in terms of Chris being able to have a bit of control over his own environment which may encourage additional movement to help control his environment, etc.he has, in general, more movement and it’s funny, Chris can do a big stretch in the morning in bed where he is activating arm and leg muscles like one would when they’re doing a good ol stretch in the morning, but he, obviously, doesn’t have the neuro connections to make similar motor movements outside of the stretching with the exception of some arm and head movements. It’s very strange that the neuro connections are there for one type of motor movement and not other types/areas. We, of course, continue to monitor for scientific “breakthroughs” in medical technology to find something to assist Chris such as stem cell treatments or even chip implants to cause motor movement or allow motor control. They are doing remarkable things with parkinsons patients using chip implants in the brain that completely eliminates any tremors with a remote hand held switch to turn on the implanted chip. So, the technology is coming, we have to keep Chris healthy physiologically so he can benefit from these advances down the road a bit. We appreciate everyone monitoring and posting here and I’m sorry for not having provided an update in a very long time. Your words give us encouragement and are very much appreciated! Without getting on my soapbox about our healthcare system, we are generally disappointed in “the system” and how in America you can very easily go broke for healthcare – an alien concept in most other civilized countries! We are a country of “haves” and “have nots” when it comes to health care in this country.
OK, off my soapbox and on my bike!
We love you all and very much appreciate your words of encouragement. Thank you to all.
The Giles Family.

So this is awesome:  Chris’s speech therapist at TIRR worked with the Texas Department of Assistive and Rehabilitative Services and a local device vendor in Austin to put together an assortment of really cool proximity switches and control devices to start practicing with (ahh, and I should explain:  proximity switches don’t require you to press them to activate;  you move a body part within a 1/4″ or so of the sensor to activate it).

The setup is a combination of some rather ingenious Manfrotto photographic / lighting mounts, velcro and proximity switches from AbleNet.  The more generalized orange AbleNet “Candy Corn” proximity switches interface with a variety of gear:  to start off with, Jennifer at TIRR set Chris up with an iPod controller and a 120V PowerLink 4 relay (that controls up to two appliances).

It takes some time, but we were able to practice turning a lamp on and off with the PowerLink relay, and had some luck playing and pausing some MP3s.

The second set of proximity switches (AbleNet’s “QuickTalker”) are very simple, completely self-contained battery-powered devices that will record a short sample of audio to conveniently play back when the proximity switch is activated.  In these particular photos, the QuickTalker devices are configured for “YES” and “NO”:

My folks are using the QuickTalker devices to augment the daily evening yes and no questions they practice with Chris;  I think the audio feedback will be really useful for Chris (hearing “YES” and “NO” when he turns his head a certain direction).

TIRR decided that Chris was doing so well, they’d extend his stay another week, discharging him on Sunday, February 17th.  Unfortunately, he came down with a urinary tract infection which really slowed him down, and probably also lead to several frightening seizures on the long trip home (my mom has noticed that Chris has seizures whenever he’s sick or has an infection).

From talking to my folks, I think things are OK now, and the weirdness where Chris’s left eye was turned inward / upward from the seizures has subsided.  My folks are glad to be home in any case.  I think they’re backing off from the higher dosage of the neuro stimulant for a while.

On the ‘better news’ side of things:

– The speech therapy folks were able to try out some nifty proximity switch devices this time around, along with the associated headrest mounting hardware, so hopefully we’ll be able to rig something up soon at home where Chris would be able to practice making choices by choosing one switch or the other.

– The PT/OT folks also sorted out some issues with Chris’s standing frame that ought to make it much easier for my parents to actually get Chris into the thing safely.  He really needs regular standing frame time to slowly get his feet back to a more normal position (the achilles tendons shorten over time if you don’t stand).

– Chris gave a big smile for the camera on one of the last nights as we were leaving for the RV park.  Pretty cool:

More updates soon, probably from my folks (I missed the bulk of this TIRR trip due to some really shite timing of projects at work, d’oh).

My folks and Chris setting out from TIRR on the long, three day journey home. Yeah, there’s an Invacare patient lift *and a dog* in there, too!

Well that went by quickly!  Chris is being discharged from this second round at TIRR on Sunday, February 10th.

My parents say Chris has made a considerable amount of progress this time.  The therapists continue to add new activities and goals, too.  The speech therapy folks have also officially confirmed – with an endoscopic evaluation – that Chris can indeed be safely fed small amounts of “pleasure food” again.  I’d say we stopped giving Chris yogurt by mouth about halfway through our time at RIOSA in San Antonio, more than a year ago!

The therapists at TIRR are also working on a head switch system to control a PC.  At the moment, making a choice between two user-defined item areas on the screen like “music” or “read a book”.

A minor setback:  Chris started having seizures this week on Tuesday night.  The episodes continued throughout the day and they eventually transferred Chris (and my dad) to Memorial Hermann hospital for the rest of the day / evening for observation.  The thought is that maybe the dosage of the neurostimulant Amantadine was a little bit too aggressive.  He’s also been more seizure-prone in the past if he had any kind of infection, or was feeling extreme discomfort (choking – and the associated panic of not being able to breathe – is a trigger).  Chris is back at TIRR and seems to be OK now, but probably knackered from the whole thing (along with an equally-knackered father).

Hopefully Chris and the team of therapists can pick up where they left off to finish out this final week or so on a positive and successful note!

More updates soon.

Great news – Chris is back at TIRR!  My parents drove out to Houston again just after the holidays, and Chris was readmitted last week.

The therapists say they’ve even noticed improvement since October, which is kinda cool, because Chris will hit the ground with just that much more momentum this time around.

Over the holidays, Chris had been raising his left eyebrow every now and then, seemingly randomly, a new thing which was alarming at first (could have been an indicator of mild seizure activity)…  but it turns out when things are “clicking”, Chris is actually able to move that eyebrow now on command!

One of the speech therapists was able to get Chris to do it for her five times in a row, and my parents are seeing the same success, too!  Even better, Chris did it for me before I left for Austin today!  WOW!

Chris is off to an amazing start.

I’ll post more updates soon!

The TIRR experience was truly wonderful as Robert has said and we’re looking forward to making a return trip in January 2013. From the cleaning crew to the techs to the therapists to the Doctors, we were truly impressed with TIRR and their holistic approach and caring attitude. The next chapter is a return trip to TIRR in Jan 2013 as Robert has said for more of the same.

They completely reviewed Chris’s meds while at TIRR and minimized what he is taking. They also changed his neuro meds. He’s now back on some very good neuro meds.

The therapy was very good to include the new therapies such as music and what they call “social integration.” The whole TIRR team is great and we can’t say enough about them. Chris’s Doctor at TIRR, Dr. Monica Crump, and her team, were fantastic!

We’re also looking into Hyperbaric Oxygen Treatments (HBOT). You’re placed into a pressurized “dive” chamber and breathe pure oxygen for an hour at a time. The facility is in New Orleans run by a doctor that has taken the lead in HBOT for brain injury, Dr. Harch.  The logistics of making that happen are a bit more involved and we haven’t worked through that yet. It would require a month and a half of treaments per “session” (a session – my term – being 40 hours of chamber time) and we’ll probably need three sessions for at least 120 hours of total hyperbaric time. Two treatments per day in the first week and then one treatment per day for the next month until we reach 40 hours. We’d go home for a bit and then come back and do it over again. 

Another patient we met at TIRR that we knew from another facility has received stem cell treatments from a company in Houston so we need to look into that a bit further. At last look, the company was being looked at by the FDA for their stem cell processes, etc., but it’s somehting to think about down the road. It also means that medical technology is moving very quickly into new areas that I think will prove to be very helpful for Chris down the road.

All in all, as Robert says, TIRR was a great experience and we’re looking forward to going back in January.

I should mention as well that Chris has the best brother that anyone could have! I know Robert is my son and I’m biased but he’s an absolutely amazing brother and human being! We’re blessed! Chris also has the best Mom anyone could possibly have. She truly is a Saint! She’s not only looking after Chris in providing him with the best care he could possibly have but she’s also continuing to run a family and keep this family glued together! We are so blessed as a family! What great people I get to share my life with!

We had a great experience in Houston and are looking forward to going back and in continuing to make progress. I know it’s slow going, but we’ll get there! Thanks to everyone for their love and support.
Dad

Chapter 7 came to a close on Wednesday, October 31st, as Chris left TIRR Memorial Hermann for home.

I’m amazed with the progress Chris made in roughly six short weeks at TIRR.  He’s able to more readily track objects, movement and people.  It seems like it’s easier for him to turn his head to the right, to look past midline with his eye, and he’s even starting to look up and down with his eye on command (outside of the horizontal plane).

TIRR even had Chris’s vision checked with a brain-injury specific eye exam (finally!!!).  In fact, this is what gave me hope about the TIRR during the admissions evaluations:  they recommended this eye exam without even being asked.  Wow.

Chris is blind in his right eye.  I’m still waiting to hear the complete results from my folks, but it’s absolutely outstanding to have been at a facility that did common sense testing like this as a matter-of-course.  Every other facility shrugged it off, leaving therapists and family to continually guess at the amount of vision remaining in Chris’s right eye, and whether Chris’s brain is reacting to visual stimulation properly.

The Baclofen pump has definitely reduced the muscle tone in Chris’s lower extremities.  I can imagine it’s a relief for him – having your muscles in a state of constant ‘activation’ could be nothing but excruciatingly painful.  Certainly guessing here, but it might make it easier for someone with a TBI to focus, without having that constant muscle tone fighting you, interfering, disturbing your intentions.  Chris is on “pump precautions” for another couple of weeks, limiting mobility slightly (no twisting of the torso, leaning forward past 90 degrees, or resting on his right side, where the actual pump unit is implanted).

The therapists at TIRR are exceptional (did I mention music therapy?!?).  I think we came away with a lot of new ideas going forward – for me, using the laptop and music as a way to encourage Chris to start making distinct and repeatable choices (instead of me just foisting videos and music on him).  We also have some new muscle exercises to try, and maybe we’ll try sitting Chris in a normal chair if we can figure out way to get him into the thing safely (the patient lifts at TIRR are a bit more maneuverable than your average kit).  There are also some nifty proximity switches we might be able to use to start getting Chris to move his head left and right to activate things, and perhaps eventually start making choices with a button or switch mounted to headrest on his chair.

All in all, a pretty damn amazing experience, across the board.  I can’t say how great the people are at TIRR.  The progress may seem small to an outside observer, but to me, it’s finally a discernible leap forward.

We definitely gotta get Chris back to Houston after the Baclofen pump precautions expire…  stay tuned.