Mariah’s Reemergence

8:30 am – Mariah awakened by Dad. She’s positively glowing and reports having had a good night’s sleep. Nurses take over to feed, bathe, dress, etc. Her team of seven has already met and set short term goals for her. One is to start using head nods and shakes for “yes” and “no” with at least 75% accuracy. This will be pursued consistently in all her sessions. It’s part of Dad’s job to do so, too, and to let nurses and others know to encourage Mariah to use her head as well as her toe wiggles.

9:00 am – Stewart arrives for physical therapy. Nurses are still with Mariah, so she’s already running late.

9:10 am – Mariah is dressed in shorts and a T-shirt and helps Stewart move her from the bed into the wheelchair. One floor down, she gets a tour of the Lokomat,

The Lokomat robotic walking device.

a high-tech robot that she’ll use next week to help her start walking again. Then she chooses to work out in a clinic setting rather than in private. Stewart helps her sit upright on the edge of the platform, and she’s able to do so unaided for a few moments. Watching in a mirror, she adjusts herself and looks as elegant as ever. Lots of work with arms, legs, twisting, etc. She’ll start using electrical stimulation in a few days, too. Unit Medical Director and physiatrist Dr. Shane McNamee catches up with us and does some brainstorming with Stewart on other approaches to be tried.

10:00 am – Occupational therapists work with Mariah sitting before the sink and mirror in her room and help her wash her own face with a washcloth. Lots of coaching and encouragement for hair and tooth brushing, etc. Mariah struggles mightily and successfully to bring her hands to her shoulders and face several times, garnering cheers from onlookers.

11:00 am – Marsha takes Mariah to her office/lab for speech therapy. She correctly answers a couple dozen questions with head movement, already nailing the goal. Including a couple of trick questions like “Did Columbus discover America?” (Turn your computer upside to read the correct answer: ON.) Mariah made sound shapes with her lips, tongue and mouth, and successfully swallowed ice chips and spoonfuls of water. She’ll take a swallow test tomorrow using barium laced foods while being X-rayed. Sounds yummy.

noon – Mariah and Dad chat in her room and then move outdoors to sit in the shade and enjoy the sun and breeze. Mariah snoozes for 45 minutes, then gets a quick tour of the mall in the hospital and helps Dad purchase a salad to take back to the room.

1:30 pm – Recreational therapy is trumped so ENT (ear, nose & throat) can take Mariah away for an evaluative exam. Dad is corralled by the military liaison  to fill out forms and answer questions, then by the social worker to answer questions, then by the psychologist who just wants to note that it seems very difficult to get time with Mariah.

2:00 pm – JT, Mariah’s kinesiology therapist and her team lead, takes her to his clinic to exercise her limbs, trunk and neck. After 15 reps of her shoving him across the room on his wheeled stool with her powerful leg thrusts, he tells her that she’ll walk again, prompting a skeptical smile.

3:30 pm – Mariah gratefully moves from her wheelchair back to the bed and naps. Dad gets the oil changed in her car and grabs a 30-minute snooze at the motel.

6:00 pm – Mariah and Dad watch “Austin Powers – Goldmember” on the VCR in her room. Lots of hearty laughs are a nice tonic. (Last night Dad put “Animal House” on and was surprised that it isn’t funny any more. One of the older nurses offered sympathy. Sigh.)

8:15 pm – Mariah says she’s ready to be alone and rest. Night nurse Brooke materializes to work her bedtime magic. (Brooke gave Mariah a real shower last night and washed/conditioned/shaved/brushed away the detritus of over four long weeks of hospitalization.)

I hope Mariah doesn’t get bored and lazy from laying around all the time.

– Mark

The pace in southern Virginia is slower than in Washington, the breeze a gentle caress infused with the scent of flowering trees. It’s the easiest thing in the whole wide world to rest in a moment and simply be peace. Drawing an unhurried breath at last, Mariah is clearly visible as an ethereal spirit waiting.

Holding Mariah in the Light (McGuire VA Rehab, 7/16/08)

Over the connection with hundreds of people who take a moment to love and hope and pray for Mariah flows the support so critical for her reemergence. The other critical element, strength, comes from deep within her own soul. It’s my great honor and privilege to be able to look into her eyes and feel that remarkable spirit at work. We who are physically present with her are often rewarded by the radiant smile that accompanies each success.

Today, Mariah was asked by her new speech pathologist whether her Dad’s name is Bob. She lifted her left arm and hand, extended her index finger and pushed it against a piece of paper on which were written “Yes” and “No”. Initially touching “Yes”, she clearly intended to move her finger across the sheet to “No”, but could not. We waited while literally all the muscles in her body struggled to unstick her arm and hand. Wondering if she might give up, her finger suddenly jumped across the page and stabbed triumphantly at “No”. Then came The Smile of pure joy and accomplishment, followed quickly by celebration and the sober moment of realization about the cost.

On a lighter note, Mariah was excited to learn that kayaking is part of physical and recreational therapy. First in the hospital pool, then in the James River. Her paddles are still in the cargo hold of her Subaru Outback.

And the VA Medical Center continues to amaze. Walking through the cavernous main floor past the shopping mall on my way to the cafeteria for a lunchtime Cobb salad, I thought I heard Christmas carols. Pictured here was today’s lunchtime floor show. (Click to enlarge.)

Lunchtime Floor Show (McGuire VA Rehab, 7/16/08)

Mail for Mariah can be sent to:

Richmond VA Medical Center
Attention: Mariah Kochavi (2B)
1201 Broad Rock Blvd.
Richmond, VA 23249

Potential visitors, please contact Mom or Dad to coordinate since Mariah is booked from 8:00 am until 4:00 pm Monday through Friday, and until noon on Saturday.

– Mark

Dad’s too tired for poetry tonight. A rather bland description of a rather remarkable day will have to suffice.

Leaving the Nest Behind (Walter Reed, 7/15/08)

After an emotional farewell with several new friends at Walter Reed, Mariah and her parents arrived at 1:30 in the afternoon at the Hunter Holmes McGuire Veterans Affairs Medical Center Polytrauma Rehab unit (try saying that one time fast) in Richmond, Virginia. Mariah reportedly slept during the entire 2+ hour trip from NW DC in an ambulance. Her Mom and Dad, each driving their own car presumably did not sleep, at least not for the entire trip.

Shortly after being moved to her new bed, the staff rigged up a “Puff-n-Call” device that allows Mariah to summon a nurse by turning her head and blowing gently into a plastic straw-like tube attached to a flexible metal hose suspended nearby. This is the first time in nearly a month that Mariah’s been given the power to draw attention to herself without being peered at relentlessly by an anxious parent. She proved to be adept at using the Puff-n-Call, ringing the nurse several times – often while others were mid-sentence – with a look of pure delight on her face. Dad likes this place already.

She’s in a pleasant but plain room near the nurses station for a day or two, just to be on the safe side. Her permanent (lol – believe me, NOTHING is permanent) room is quite attractive. Pics and contact info coming soon.

In the hallway is a huge whiteboard filled with a matrix showing the daily schedule of each patient: one row per patient, one column per hour of the day. Mariah is already scheduled for four hours of therapy tomorrow, plus an hour with her social worker and time with her psychologist. As soon as she can handle it, her days will be filled, including Saturday mornings. That, of course, is the point of rehabilitation.

When the Medical Director of the Polytrauma unit did his initial assessment with Mariah, it was discovered that she’s had a pretty bad headache much of the time since her stroke. Duh! Feeling less smart with each passing day, Dad’s grateful reemergence is a team effort.

– Mark

Okay, so Sunday was a bit of a downer, but Monday made up for it in spades.

First, and most important, Mariah spoke. One little word: “No”. Her nurse and I and Mariah were all so astonished we were speechless for a moment. Then the nurse shouted “Praise the Lord”, I grabbed Mariah and shouted, “My God, you spoke!”, and Mariah laughed hysterically with tears running from her eyes. I remember the excitement everyone felt when Mariah and Clay said their first words as infants. This was 100x better. Maybe more. With the infants, there was a certain oblivious certainty about the event. This time around, we’re keenly aware of what’s at stake and how terribly important each tiny breakthrough is.

Second, Mariah was in a buoyant mood, inspired by loving caregivers, family, friends, and colleagues.

Mariah was pensive today. Granted, she laughed at an episode of Scrubs and Reno 911, smiled at the warm and very handsome Chaplain who dropped by, and grinned like a little kid at an amusement park as she flew on a magic carpet (okay, on a bed sheet) from her wheelchair into her bed with assistance from two strapping nurses. But those moments felt like exceptions, and when I wiped a tear from the corner of her eye early on she said she was having a sad day.

And that tear was followed by another and then several more as the afternoon and evening wore on. Mariah was elegant and graceful throughout, although melancholy. Picking up on her mood, visitors were generally quiet and respectful.

Maybe it’s got something to do with Mariah’s imminent departure from this nest where she’s made dozens of friends and has had a palpable effect on the staff who still drop in to visit her even after they’ve been “rotated” to other wards. Maybe it’s got something to do with discomfort she’s been having for a couple days that might involve her kidneys. Or maybe it’s just a rainy, lonely Sunday afternoon with not much going on for distraction.

As the day languorously metamorphosed into evening, Mariah seemed to take comfort from listening to a CD of Bhutanese nuns making beautiful music.

Who knows?

According to the nurse, Mariah was found sitting up in bed last night. Go Captain K!! 🙂

Here are some pics of Mariah from today.  Click to enlarge.

– Mark

Lots of little updates today:

Mariah used her toe wiggles to communicate her military computer PIN number to her commander. It can’t be revealed here or the entire Internet will have to be deleted.

Mariah's Yes/No Toes (7/11/08)

The departure by ambulance for Richmond is scheduled for next Tuesday at 9:00 am. That’s pretty late in the day for the military. They usually do things at “oh dark thirty”. The trip will take over two hours unless they hit the morning rush, in which case we could have a new president by the time we get to Richmond.

The nasty test looking for structural issues with her heart came back negative. That means there’s still no definitive explanation for the stroke. Mystery in spiritual matters can be pleasing; less so in the physical realm.

The speech therapist gave Mariah little spoons of applesauce to see how her swallow is faring. The first went smoothly but the second was less cooperative, and Mariah struggled for a moment. After she recovered, the therapist said, “Well, that was probably enough. Do you want to try one more?” Watching her “no” toe (see above), Mariah instead shot us a resounding “yes” and climbed right back up on that wild horse. The third try worked perfectly. Army strong.

– Mark

It’s funny how themes emerge.

This morning, Mariah had a visitor from the Armed Forces Institute of Pathology, Taylor Chance.  He reminded her how anxious they are to have Mariah join their elite team of scientists.  At first Mariah felt regret, but Taylor said all she needs is one good hand and they’ll put a microscope in front of her with a bunch of slides and she can just start working her magic.  Mariah grinned at the thought.  Maybe some things aren’t so far off after all.  

Mariah Climbing in Texas (5/08)

Shortly after noon Mariah, her family, the entire medical team at Walter Reed and an equally large medical team from the Richmond VA Medical Center participated in a video conference call.  The Washington camera zoomed in on Mariah sitting in her wheelchair so her face and her toes could be clearly seen.  The Richmond team spoke directly to Mariah, calling her “Ma’am” as they do in the military, and she responded with appropriate facial expressions and yes-no toe wiggles.  The purpose of the call was for Mariah and her family to ask questions of the team in Richmond – lots of good questions were asked, and excellent answers given.  We were told that Tuesday, July 15 is when Mariah will be moved to Richmond.

The Richmond facility is a recently renovated 20-bed polytrauma unit attached to a 450-bed medical hospital and is run by a brilliant physiatrist.  Visiting family living quarters are a few steps away.  In the unit Mariah will receive several hours a day of physical (PT), occupational (OT), speech, recreational, and kinesiologic therapies.  It is a goal-oriented program with short-term, long-term and discharge objectives spelled out on day one and modified while continuously followed.  A mental health team of two psychologists looks after the emotional state of both Mariah and her family. 

Later, during during PT and OT today Mariah showed greater strength in both arms taking delight in sweeping her right arm slowly across the table and banging into a bell that rang loudly each time; 15 reps on the left and five on the right left her pretty wrung out. 

At the end of the day I shared Mariah’s Army annual performance review with her.  Her commander’s commander had asked me earlier in the day to read it to her and get her reaction.  Needless to say the review from both her boss and her boss’ boss was glowing.  She received the highest possible rating in every category and the narrative portions cited her many achievements and outstanding successes (including managing food inspection for the 2007 Army/Navy footbal game in Baltimore) during the previous year.  Both Colonels recommended she be promoted from Captain to Major.  Mariah squeezed my hand and wept what I assumed to be tears of joy, pride, gratitude and grief.

Mariah at the Top (5/08)

Reflecting on what was, what was to be, what might have been, and what is, is a challenging, bittersweet experience.  It’s not pleasant yet, but it is rich and deep.  Like Mariah. 

– Mark

Tough day for Mariah. Nasty “procedure” this morning to check out the structural integrity of her heart. The docs are still trying to figure out why she had a stroke so she can mitigate those risk factors in the future. That required a breathing tube and a probe into her tummy right next to her heart. 😦 That ordeal was followed by hard physical and occupational therapy that made her weep. In the plus column, she was able to sweep her left arm outward with enough force to smack the therapist pretty hard. That made Mariah smile broadly. 🙂   And later her speech therapist rigged her up with a sensitive switch attached to her left index finger that turned on a radio when she wiggled it. When asked to turn it off, Mariah refused as she was listening to a country favorite. Her courage and determination break my heart and fill me with awe.

It’s great to be working from DC and close to Mariah again, but the doctors apparently plan to move her to Richmond, VA, to a big Veterans Administration rehab facility next week. The round trip from DC to Richmond is over 4 hours and about $40 in gas, so I’ll probably be moving again soon. With most of her support network based around DC, I worry that Mariah will have far fewer visitors in Richmond. But the care is reputed to be very good and she can stay there on an inpatient basis for as long as necessary, a requirement most private rehab facilities paid for by insurance can’t fulfill.

Mariah said goodbye to her brother Clay this afternoon when he reluctantly returned to North Carolina. He was cheered when he realized his sister will soon be much closer to him. “Only fifteen hours by bicycle”, he chirped.

What is it with these kids?

– Mark

Mariah’s brother, Clay (a musician based in Raleigh, NC), has been watching over her since the weekend. His gentle touch and calm, caring demeanor have been balm for me – and Mariah, too, I’m certain – when we talk on the phone several times each day.

According to Clay, today Mariah swallowed (!) some yellow Jello. I reminded her that she was cautioned as a kid to avoid eating yellow things unless they passed the sniff test. Clay merely laughed, but Mariah wiggled her toes.

He also reported that she laughed out loud (!!!) while listening to a book-on-tape. I’ve seen her laugh (her sense of humor is intact), but there was no sound. Clay assured me there was plenty of sound – “a great big old regular Mariah laugh”, as he put it.

Clay and Mariah last Christmas

Ah, yes. Now I hear it clearly. What a delicious sound it is. I can’t wait to see her tomorrow afternoon.

– Mark