Monday, July 25, 2011

Update from David

Aloha to our Ohana,

A few weeks have gone by since the last update and we're truly thankful to our
Lord for all of the good news He has blessed us with since then.  Theresa has
called almost daily to chat and provide updates on her progress.  She's started
to walk/jog in the pool recently and finds that to be less tiring than walking
on the treadmill.  Theresa says she would much rather be swimming in the warm
waters off the Kohala Coast, however that will follow in due time.  I do sense a
note of frustration in Theresa's voice on occasion but who among us wouldn't
feel the same after spending over eight months in hospitals and rehab facilities
far away from home.  That she is able to maintain her positive outlook and
encourage others since before she could even remember doing so (because of her
post traumatic amnesia) is a testimony to the healing powers of our Lord.

Bakersfield was in a prolonged heatwave for the last few weeks with temperatures
soaring as high as 109F (43C) so it greatly limited Theresa's outdoor activity
time.  Her therapies at the rehab clinic continue to improve her strength,
endurance, dexterity and cognition, and when she is back at the residence,
Theresa tries to stay cool by reading, writing to friends, and even coming up
with new cooking ideas.  A few days ago, she called to say the recipe for a
Moroccan-style chicken dish turned out so well, she froze some for me to enjoy.
Over the Independence Day weekend, the CNS residence held an afternoon potluck
dinner and one of Theresa's contributions was a tray of cupcakes with
alternating red/white/blue frosting.  For whatever reason, only the blue
cupcakes were taken so Theresa in her own inimitable way, rearranged the red &
white ones to form a stylized flag of Canada.  Since there's no celebrating
Canada Day down here, I think that was Theresa's way to do so; always creative
and a little mischevous at the same time, that's what I love about her.

In early July, my return trip to see Theresa took a different tack as this was
the first time using the service to bid for a ticket.  With the
next treatment conference scheduled for the upcoming week and quoted airfares
stubbornly staying in the $1200 range, I figured what harm could there be since
Priceline guarantees a 1-stop connection and layovers of 3 hours or less.  Well,
after bidding and winning a $580 ticket, the itinerary turned out fine with one
caveat -- the puddle jumper to Bakersfield wasn't scheduled to arrive until
2359h, but the car rental desk closed at 2330h.  While waiting for the late
connection at LAX, I phoned the car rental agency and explained the situation.
The nice lady said not to worry as they're familiar with that late arriving
flight and would wait until 0015h.  Praise the Lord, the flight came in on time
and I made it to the rental counter by 10 after midnight.  In my luggage was a
bag of chocolate macadamia nuts intended for the rehab clinic staff that I
gratefully offered to the rental agent.  With both of us happy, it was off
to the hotel for a few hours rest before the busy day ahead.

Fighting off the jet lag, I arrived at the CNS clinic early the next morning to
find Theresa in the dark, literally.  She was attending occupational therapy in
the darkened Dynavision room, being retested for her peripheral vision and
ability to read numbers flashed for less than 1/4th of a second.  These
results showed some improvement in Theresa's recognition and reaction times
compared to two months ago.  At PT, Theresa walked on the treadmill up to 30
minutes at 1.5mph, almost twice the speed and endurance from a month ago.
However when free walking with a cane, Theresa seems somewhat tentative and takes steps more deliberately and thus slower.  Following the group counseling session (that I
didn't attend), we wheeled over to the nearby shopping center and enjoyed lunch
at El Pollo Loco, a Mexican fast food chain known for their chicken.  Aside from
a street vendor in Tulum, this is the tastiest citrus grilled chicken we've ever
had.  While foodies may deem it the Mexican equivalent of KFC, our motto is if
it tastes good and is semi-healthy, what's not to like?

The afternoon rehab sessions went quickly, which was good because it was plain
to see Theresa was tiring out and about ready to call it a week.  Plus, CNS
planned for Theresa to spend the upcoming weekend with me at the hotel so I
could assess her abilities and let them know which areas to concentrate on over
her remaining time here.  But before our romantic rendezvous could start,
Theresa had previously booked the Friday evening dinner outing to Red Lobster.
Now those of our friends that know us well are aware that I'm seriously allergic
to certain shellfish (and beer & wine) so dining at RL is akin to someone with a
nut allergy taking a tour of Planters.  I judiciously chose tilapia, the safest
seafood item on the menu while Theresa went all out and ordered a dozen raw
oysters for the more daring among us.  Some of the rehab aides have never tried this
delicacy so it was a surprise when several of them indulged, leaving just a
couple to whet Theresa's appetite as she waited for her main course.  When the
whole Maine lobster platter arrived, it was a sight to behold as Theresa dove
in methodically, doing her occupational therapist proud with her improved hand
dexterity.  It brought back the memory of our first road trip together in 1992,
when at the Sooke Harbour House on Vancouver Island, I learned that when it
comes to eating whole lobster, Theresa has few equals.

The next morning, Theresa met me for her weekly grocery outing at Trader Joe's where the improvement from our first outing in April was entirely evident.  This Saturday, Theresa was focused and determined and knew the store intimately well, wheeling herself directly to the aisles and shelves to get what she needed, plus a coffee and food sample as a reward for a shopping experience well-handled.  It's too bad there isn't a TJ's back home but I'm sure the vendors at the Waimea Farmers' Market will welcome Theresa back with their own special Aloha.  Dropping off the groceries at her apartment, Theresa organized and packed a weekend bag by herself before we headed off to my hotel room.  On the way, she wanted to stop at Target for a few toiletries and while there, we checked the registry for an upcoming wedding to which we're invited.  This is the wedding of the oldest child of the family that readopted our daughter Rylie Ai-Lin and because it is being held only three hours from here, we fully intend to be there to celebrate their happiness.  That our Lord has blessed us with this wondrous opportunity on our healing journey is yet another miracle for which we offer our praise and gratitude.
After arriving at the hotel room, I helped Theresa to unpack as she checked out the bathroom.  Women (at least ones I've known) seem to do that often, never really concerned about the bed, the TV or even the view as long as the bathroom suits their needs.  Apparently, it met with her approval because following a light dinner, Theresa announced that she wanted to take a bath.  I didn't think much of it until I fully appreciated what she was asking.  Instead of sitting on a bath chair and using a handheld showerhead, she wanted to soak in the tub up to her neck.  After considering the logistics for a bit, I helped Theresa sit down in the tub and then added foaming soap as the water level rose.  She luxuriated in the warm bubbly bathwater and the look of satisfaction on her face brought tears to my eyes.  It was only then I realized the importance of this day, the first time Theresa has enjoyed a soaking bath in over eight months.  Getting out of the tub took a little more ingenuity on both our parts but in the end, it was worth all we've been through to get to this point.

The remainder of the weekend was also a revelation as Theresa pretty much cared for herself, bathing, dressing, taking her meds on time, getting breakfast in the lobby, and making it through the night uninterrupted.  We also took in the movie Super 8 and Theresa stayed alert and engaged throughout, thoroughly enjoying the show.  This is a big improvement compared to when we viewed X-Men a couple of months ago where she felt the need to leave halfway through due to fatigue & overstimulation.  Returning to the CNS residence on Sunday evening on the heel of this successful trial, we kissed good night and looked ahead to the update conference the next day.
At the treatment conference, Theresa's various rehab therapists presented updates on her progress with no real surprises.  There is marked improvement in some areas with deficits still noted in others and although Theresa has benefited much from the specialized treatment at CNS these past four months, it's time for her rehab to take the next step.  That will mean progressing back home to a truly independent living environment so with this goal in mind, a tentative discharge date was set for the end of July (is that cheering I hear from our Ohana?)  In preparation for her long anticipated return home (where there are far fewer brain injury rehab services), the discharge planning will involve contacting resources in Hawaii as well as seeing a number of neuro specialists in the Los Angeles area over the next two weeks.  CNS highly recommended that I accompany Theresa to these appointments in case there were questions she or her aide couldn't answer, so what was originally a short 4-day kiss & fly trip grew into an extended 2-week whirlwind of further testing & specialist consultations.
Over the next 10 days, we drove to Valencia, Northridge and other points on the compass to see a neuro-optometrist, a neuro-psychiatrist, an orthopedic surgeon, a neurologist, a neuro-psychologist, a neuro-neurologist (just kidding) and even a few imaging facilities for CT angiography, MRI and plain old x-rays.  In cases such as with the neuro-optometrist, the diagnosis was very pertinent to Theresa's complaints.  It was mentioned previously that Theresa walks well on the treadmill but not so freestyle.  After testing her eyes and adding prisms to her glasses, Theresa was able to better converge the views from both eyes, improving her vision and balance.  It really is amazing how the interaction between our eyes and brain are so important to walking and we are truly thankful to our Lord for guiding us towards these healers.

The next day, another two hour slog on the Los Angeles freeway system led to 
a visit with a neuro-psychiatrist who prescribed a change in medication,
schedule, and dosage to combat Theresa's mid-morning fatigue.  Later on at the orthopod,
it was discovered that the ongoing pain in the left knee is due to a previously
undiagnosed meniscal tear, which will require a followup consult and
arthroscopic surgery back home.  This was also Theresa's first opportunity to
see detailed images of the wide assortment of rods, pins, plates and screws in
her neck and other extremities.  Her off-the-cuff comment was "no wonder I ache
all over after PT!"  On a positive note, the orthopod noted that the majority of
the fractures are healing well and perhaps in 6-12 months, we should consider
having some of the supporting hardware removed.  With additional appointments
scheduled following my return to Kona, I pray a solution will be found for
Theresa's continued inability to flex the toes on her right foot along with the
sensation there of constant tingling.  Up until the day I had to leave, Theresa was
still undergoing intensive neuropsychological testing, which will provide a good
baseline measurement when she is reassessed in a year or so.
With all of this going on, I still needed to return home to make arrangements for Theresa's eventual care in Hawaii.  My return ticket was pretty much useless as the change fees and fare differential would have amounted to over $800.  Then inspiration struck and I found a $238 one-way flight from San Jose to Kona on Alaska Airlines.  Bidding Theresa farewell and promising to return during the week of her expected discharge, I began the four hour drive leaving Bakersfield at roughly 0200h.  At that time of night, the roads are mostly quiet except for the occasional convoy of trucks, possibly driven by vampires according to my wandering thoughts (have to stop watching True Blood in the hotel room.)  Being the middle of the night, the temperature had dropped sufficiently that I could drive with the windows open.  This not only kept me more alert but it also let in the varied smell of the counties.  Moving from the petroleum odor of Bakersfield, to the lush greenery of the Central Valley's agriculture and onto the cow manure of the California dairy industry, it was an olfactory delight that kept me going until the harrowing mountain pass between I-5 and Hwy 101.  Descents through fog-shrouded winding roads can be full of dangers but not to fear, even in the wee hours this day my guardian angel kept up and I made it safely and on time to the San Jose airport.  Having never flown Alaska Airlines before, it was a pleasant surprise when they served a Kona coffee cookie upon departure and a mac nut sampler nearing arrival.  I was greeted by our dear friend Betty who Theresa first met over even before moving here.  She, along with a few others have generously provided me with rides to/from the airport since this began and I am truly grateful to them and to our Lord for sending these angels in our time of need.
Back home for the past week, I was able to confirm the services of not one but two homecare providers to support Theresa.   A month ago, I had no leads and with the help of friends and associates at work, everything is quickly coming together in preparation for Theresa's homecoming.  For this among all of the other miracles and blessings our Lord has graced us with, please join me in giving thanks.

P.S.  With a tentative discharge date now in place, my plan is to bring Theresa home on the United flight from LAX arriving in Kona at noon on Saturday July 30.  It would be a wonderful show of support if some of our Ohana could be there to welcome Theresa home following our 8-month journey of healing grace.

Monday, July 4, 2011

Update from David

Aloha to our Ohana,
The last update ended with our becoming lost while looking for Lake Isabella however the Good Shepherd was watching over us as always.  He ensured our safe passage while traversing a narrow, winding mountain pass and when we stopped at a turnaround to do just that, the distant view of the lake was revealed in all its glory.  On the way back through town, Theresa needed a restroom break (and I needed to just plain rest) so we stopped at that ubiquitous Scottish chain restaurant that has a presence in most American towns.  While McDonalds is not usually on our frequented dining list, their restrooms are handicap-accessible and mostly clean, mostly.  So feeling somewhat guilty for having used their facilities, Theresa ordered a frozen strawberry lemonade which she promptly handed to me after only a few slurps.  For our Wisconsin ohana, Culvers has nothing to worry about as this artificially sweetened concoction is hardly a match for their lemon ice cooler.
The return drive through the mountains was just as beautiful with the raging river on Theresa's side.  She appeared mesmerized by the sheer force of the water and just stared as it dove and cut its way through the canyon.  I was kept busy concentrating on driving the right line through the twisting road and at one point definitely made use of the rental Kia's entire 102HP arsenal to overtake a slow-moving propane tanker.  Just as we safely completed the pass, I noticed two sheriff cars parked at the bottom of the hill.  If their radar/laser was aimed this way they would have had easy pickings that afternoon.  Instead, both of the deputies were out of their cars just shooting the sh*t and enjoying the late afternoon sunshine.  For that serendipitous moment, both I and my insurance premiums continue to be thankful for our Lord's grace.
Returning to Theresa's residence, we shared the remainder of a lovely day together.  As she showered by herself (a seemingly simple task that we take for granted until we no longer can,), I prepared a dinner of wild Alaskan salmon using what was available in her refrigerator.  A chef friend once told me that fine cooking is nothing more than the application of heat and spices to good quality ingredients and that was certainly the case here.  Back home, the TV is usually off and especially during meals however here it's just the opposite -- I suspect its purpose is to keep the rehab aides awake 8^).  We still enjoyed dinner despite having The Simpsons as a distraction and besides, that show has jumped the shark so many times, you'd think the shark would have died of starvation already.  Still, we are grateful to our Lord for providing these precious moments together and know that some day soon, they will be more plentiful.
Monday was our final day together on this go-around and it would be dominated by the treatment update conference.  Before that, Theresa had PT in the morning and she bested her previous treadmill record by walking 25 minutes non-stop.  Towards the end, I could tell she was in some pain however she soldiered through anyway.  With a few minutes remaining in the session, the physical therapist wanted Theresa to work on getting up from a prone position but that was not to be as her aching joints cried out for mercy.  Continuing on to the cognitive rehab and education session, Theresa completed the sorting and written comprehension exercises cleanly.  That led to the lunch break where Theresa and I sat with Wade, her alumnus from Craig Hospital and his wife.  Comparing notes, both patients have similar opinions of their stays so far -- the rehab therapy at the clinic is top-notch however the residential followup is lacking.  That was the message we brought to the conference and the management assured us it would be addressed.
From the therapists' viewpoint, Theresa has been initiating well at the residential facility, especially since moving to the single apartment unit.  Without roommates, Theresa has to do all of the cleaning and she has it down to a T.  Watching her run the vacuum from a standing or seated position is a sight to behold.  CR reports that Theresa's episodic memory is improving (what she had for lunch; what's on her to-do list?) which is an important step towards rebuilding the executive functions of logic and problem solving.  PT testing shows Theresa is making good improvement in strength and flexibility although stairs are still her nemesis, sometimes leading with the weaker leg which results in unsteady ascents.  Vestibular balancing is also an issue when her feet are lined up heel-to-toe (likely related to her cerebellum and/or brain stem injury) so it's good that Theresa isn't driving yet as she'd be unable to pass a field sobriety test.  From an educational measure, Theresa's reading comprehension is at 87% which is equivalent to a grade 14 level; given her prior accomplishments, she should be at the top level of grade 18 so there is still some work to do.  And from a counseling perspective, Theresa maintains a good attitude, taking bad news in stride, encouraging other patients and having good self-worth and esteem.  For me, it's good to hear of Theresa's progress and also be reminded of her current limitations.  Of utmost importance is her positive attitude and determination which really comes through in the photos and for that I continue to praise our Lord for His Gift of Healing Grace.
The first week after I returned home, Theresa phoned to let me know of her continued healing and progress.  She was now walking up to one mph on the treadmill and her endurance was steady at 25 minutes.  There were also stories of the weekend outing to the movies and eateries, one of which really touched me.  This night, the plan was for the group to go to the Noriega Hotel & Restaurant for a Basque family dinner (like the one we went to in the last update) however no one bothered to phone ahead.  Upon arrival, it was discovered that there was a private function so the restaurant was closed to the public.  With a bunch of hungry patients getting restless, Theresa recalled from her list of Basque restaurants that Benji's French Basque eatery was nearby so off they went.  While Benji's had room, a glitch arose with the rehab aides' presence.  At Noriega's, the management would allow the aides to sit with and assist the patients with their dining but at Benji's the rule was that each occupied seat had to place an order.  So with the aides unwilling to order, it seemed like the group would return home hungry until Theresa decided to pay for the all-you-can-eat soup, salad, appetizer, and dessert portion of the meal for the aides.  The restaurant agreed that would be sufficient and dinner was on.  All went well and everyone in the group enjoyed themselves, some sampling Basque cuisine for the first time despite having lived in the area all their lives.  I later asked Theresa how she came up with the money to pay for all of the aides' meals and she said it came out of her pen sales and savings from the unspent grocery and outing money.  Once again, Theresa's generosity and loving attitude come through and even for the non-believers among us, it's hard to argue against this sign of the healing power of God.