Monday, June 11, 2012
Update from David - June 2012
Aloha to our Ohana,
It's been over six months since we last wrote and much has happened in the interim. We continue to give thanks to our Lord for all that He has done for us and all others. For those that follow Theresa's Facebook postings, some of this may be old news but for our non-FB friends, it is a refreshing year-in-review of the miraculous healing journey that follows Theresa's return home from the mainland rehab facilities that took such good care of her for the previous seven months.
The first few weeks back in Hawai'i saw a whirlwind of activity. Our lives were kept busy with 1) setting up a schedule of therapy for Theresa at Hawaiian Rehabilitation Services in Kailua-Kona; 2) flying over to Honolulu for initial consultations with various medical specialists; and 3) getting to know and work with the two caregivers (Nancy & Pam) who would share in Theresa's in-home rehab. With these plans in place, Theresa was able to maintain her PT, OT, speech & cognitive therapies with little to no lost time and continue what was started on the mainland.
And sure enough, the first few months at home saw some amazing progress in Theresa's healing. She has improved to the point where a cane is no longer needed for walking around the house however she still prefers its security when venturing outdoors or on uneven terrain, or when she is fatigued. Still, I can see by the way she swings the cane that one day, it will be retired to sit alongside her other no-longer-needed mobility devices, ready to be donated to someone else in need. The one other mobility support that still sees occasional use is the Quickie wheelchair. This custom-sized aid comes in handy for longer distances such as at Costco or at the airport where Theresa's walking stamina can be challenged.
This is not to say Theresa's healing journey has been without setbacks. Every time she gets up out of a bed, chair, car, etc., I can see the effort she is expending and the grimace from her aches and pains is evident on her face. Bless her heart, Theresa still gives it her best effort and even made a point to stop taking the oxycodone painkillers shortly after arriving home. As she says, pain is a sign that she's alive and the last thing she needs is to deal with an addiction issue down the road. That Theresa has come so far along continues to amaze me and those that see her. It truly is a miracle and for that, we give thanks and praise to our Lord.
As alluded to already, one major side effect of a brain injury is the feeling of constant fatigue. This symptom can and often does hinder Theresa's ability to get the full benefit out of her rehab therapies so we have begun the search to find some relief. Both Western and Eastern medicine may hold the answer but for now, we are relying on the Western methods as they have taken us so far along this healing journey. With the dearth of medical specialists where we live, it means frequent flights to Honolulu and e-mail consultations with those at the forefront of brain injury research on the mainland and even internationally. That doesn't mean we're ignoring traditional Chinese medicine either as Theresa is having some success with accupuncture treatments for pain relief, improved circulation and activating the body's own healing mechanisms. One other non-traditional healing technique she has learned is tapping, which is known to improve memory and reduce stress.
In November, Theresa underwent a sleep study at the Kona clinic of Sleep Center Hawai'i. I had suggested this not only for Theresa's benefit but also for my own. Since returning home, she was waking up every hour or two to use the bathroom in the middle of the night, although she really didn't need to. Of course, this also affected my quality of sleep so there had to be a solution short of our sleeping in separate rooms. Sure enough, the results of the overnight study as interpreted by Dr. Barthlen proved that Theresa was suffering from severe sleep apnea -- so in spite of what seemed to be almost twelve hours of sleep every night, Theresa never reached the deep sleep that all of us need in order to truly rest our brains and she was waking up exhausted. A CPAP (constant positive air pressure) machine was prescribed and ever since, Theresa sleeps for almost eight hours uninterrupted, does not need to get up for bathroom breaks, and wakes up with more energy, as do I. As a point of interest, we learned from Dr. Barthlen that sleep apnea can affect all age groups but their clinic has very few newly diagnosed patients in their mid-50s or older. The reason for this is because by then, many severe sleep apnea sufferers will have already died from some cardiovascular event most likely caused by lack of proper sleep. If this comment saves even one life, it will be worth it being mentioned here. Get yourself to a sleep clinic if you regularly wake up exhausted after a full night's sleep.
In addition to resolving the sleep-induced fatigue symptoms, the Center for Neuro Skills (where Theresa stayed for almost four months in Bakersfield, California) recommended a test to measure Theresa's HGH or human growth hormone level. Their cutting edge research has identified some recovering brain injury patients have lower than normal HGH levels. As its name implies, HGH is responsible for growth in our childhood and adolescent years however it continues to be produced by the pituitary gland throughout our lifetime. It's believed that a severe brain injury can damage the pituitary gland and result in lower HGH production. This can lead to fatigue, memory loss, cognitive difficulties, muscle deterioration, weight gain and other symptoms usually associated with aging, and all of which Theresa was experiencing. Sure enough, the lab results confirmed she was severely deficient in her HGH production so a trial program to boost the levels with daily injections was started. After just two months, the results are amazing with Theresa's fatigue, endurance, and thinking abilities all showing noticeable improvement.
Just before Christmas, Theresa's healing had improved to the point where we felt it would be a good challenge to take a trip to Alberta, Canada, to visit friends and family but also to get an alternative medical outlook on her current treatment and rehab program. It would be our first long distance flight since returning from California four months prior and Theresa did me proud by walking into the jumbo jet without any assistance. On one flight, she even had to go all the way back to row 42 and did so with a spring in her step. We're so grateful to our Lord for Theresa's healing progress and the chance to see faraway friends that have prayed for and supported us along the way. The most frequent comment we heard was their amazement at how well Theresa was doing -- much better than expected and not just physically and mentally, but also spiritually. That she can keep her optimism and positive attitude through all that has taken place is yet another gift of Grace.
For those that may not be aware, the Canadian healthcare system may seem to be "free" but that's in name only. Canadians pay for their healthcare with an income tax level that's almost 30% higher than in the U.S. but even then, whenever something is free, there is always a catch. In this case, it means a shortage of providers and equipment so the waiting list for non life-threatening diagnosis and treatment can stretch into the weeks or even months. Suffering from a suspected torn knee ligament can mean being out of work for days or weeks until your MRI appointment time arrives. Of course, if you're in a car accident and have severe bleeding in the brain, you'll get your MRI that same day -- it just means the knee sufferer is pushed even farther back.
With the shortage of publicly available medical technology in Canada, the art of medicine has taken a different practice style. This means the patient is treated as a whole person rather than the sum of their symptoms and ailments. Fortunately for us, Theresa has had about enough diagnostic imaging for two lifetimes so all we were looking for was a review and alternative opinion of her current rehab and treatment plan. The basic diagnosis and review was that Theresa was receiving proper care for her ailments however the big picture revelation is that the injuries she sustained have aged her the equivalent of 30 to 40 years. With this game-changing interpretation of her condition, the goal becomes a challenge of how to reverse the premature aging before it becomes a permanent condition. As it turns out, we're already doing a lot of the right stuff including rehab therapy, HGH treatment, home exercise, etc. What was recommended was the addition of some specific supplements to aid the brain healing process. For each patient, the combination would be different but in Theresa's case, adding certain amino acids, cholines and other supplements to her diet would be beneficial.
One other noteworthy aspect of our visit (and I include this more as a reminder to myself) is that it's darn cold in Alberta in the winter! When packing for the trip, Theresa's fleece shirts, pants, boots, gloves, etc. were all accounted for but what completely eluded me until we were at the gate at SFO awaiting the flight to Calgary was that I had forgotten to pack any clothes for myself other than socks and underwear. So here we were, waiting for a flight to the great white north, and I was the only one at the gate wearing an aloha shirt and summer-weight silk dress pants. Well thank goodness for modern conveniences as I was able to get off a text to my brother in Calgary to meet us at the airport with a coat & sweater. With modern air travel, the ability to go from 80F to -20F in less than eight hours is an everyday occurrence. But it wasn't until the plane descended through the cloud layer and made its approach that we realized we would be landing just minutes before the onset of a snowstorm. Suffice to say that we made it through customs and immigration in record time, although the officer commented that most people fly SOUTH for the winter. My brother Michael came through with some much needed warm clothing, and we arrived at the hotel before the snow made the roads impassable (at least to a transplanted islander that hasn't driven in winter much except for those three months in Colorado last year.) With the storm upon us, the only prudent choices for dinner were pizza delivery or the in-hotel restaurant; so on our first night in Calgary, it was a Maritime meal of fish and poutine. Thank you Dear Lord for getting us safely to visit family and friends.
The next morning, the storm had passed and left behind almost two feet of the white stuff. As is usual in Alberta, the sun was again shining and lighting up the beautiful blue skies although there were now ice crystals in the air and a sheet of black ice under the snow. The plan was to meet with Theresa's family for brunch but first we had to deal with the snow on the rental car. This one had seen better days and even the ice scraper was missing three of its five teeth. With the ground as slick as a skating rink, prudence suggested that Theresa stay in her wheelchair until the car was warmed up and the snow and ice were scraped off. But rather than sit in the car and freeze her butt off, Theresa wanted to help so I put her to work brushing snow off the trunk. From the looks of the photo, she had quite the job and she did it admirably! All went well with the rest of our trip, including a few days in Banff National Park in the Canadian Rockies. Trust me, the mountains look so much prettier when you're curled up next to a roaring fireplace and not braving the sub-zero temps.
In February, we were contacted by one of the local TV stations asking to do an update story on Theresa's healing journey. The reporter said that they had received several requests from viewers for a follow-up on Theresa so we were happy to share our wonderful story. The timing worked out well with the TV crew filming Theresa at the rehab facility in Kona and then coming to our home in Waikoloa for an interview. It also gave us the opportunity to mention the annual Brain Injury Conference that was scheduled for March in Honolulu. Theresa has ongoing check-ups with various specialists so we planned them around the week of the conference. There was especially good news from the visit with Dr. Mitsunaga, the orthopedic surgeon. Diagnostic imaging showed Theresa's elbow has healed to the point where some of the hardware that held it together can be removed on a future visit, so she's looking forward to having better range of motion some day soon.
The other reason for being in Honolulu in March was that Theresa was invited to speak at the annual Brain Injury Conference. In addition to all of the findings presented by the medical personnel, military, and others in the forefront of brain injury research, the organizers were looking for a speaker with a patient's point of view -- and who better to represent the patient than someone who has survived not one but two separate brain injury events these past three years. Theresa was very excited to have this opportunity and spent some time at home preparing her talk. We even did a trial run and timed it but she could only speak for about five minutes at most although the time alotted was half an hour. What to do with the other 25 minutes? We thought about it, then prayed on it, and an inspiration came to us. Talk about the steps we took to arrive at this stage of Theresa's healing journey, and how the Lord has guided us along the way. Once that seed of an idea was planted, the rest came naturally and sure enough, Theresa made a heart warming speech to a standing ovation.
If you're still reading at this stage, then we have a final story of inspiration to share. In the past few months, Theresa along with her home caregiver Pam, have visited both the Kona Police and Fire Departments to thank them in person for their heroic efforts on that fateful day of November 19, 2010. At the police department, Theresa saw for the first time the photos of just how badly damaged her car was. We've heard it from the first responders before that they really did not expect to find anyone alive in that wreck. Having seen the photos, Theresa and I know how truly blessed she was that day and ever since. At the fire department, the rescuers replayed that day from their memories for Theresa and told her how her car had rolled so far off the road that their Jaws of Life could not reach it until they carried the generator into the lava field. Even then, it took almost half an hour to cut the car apart and get her out. Theresa's legs were so tightly wedged beneath the dash and they weren't sure how to extricate her, with time being of the essence due to her severe blood loss. As it turned out, her legs were broken in just the right way so that they could get her out without spending more precious time ripping apart the dash. But that wasn't the only miracle that day. After Theresa was flown off to Waimea, the rescuers began to collect their gear but for some reason, the Jaws of Life would not retract. It wasn't until the team returned to Kona that they discovered the generator had burned out its spark plug, but not before it had completed its job. Theresa has no direct memory of that day however she does recall being in the presence of St. Michael, the Arch Angel, watching over her and lifting her up. For this act of divine intervention among all of the other miracles that have taken place since, we give thanks to our Lord and Savior, Jesus Christ.
David and Theresa
P.S. We are back in Honolulu this week for the surgery to remove some hardware from Theresa's elbow. Please join us in praying for a successful outcome on Tuesday morning.