“IT WILL TAKE TIME”

27
Mar
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Summary – the cause – the injury – today’s quality of
life?

2005 Custom Harley vs 2007 Ford Focus; he was 15 feet from our driveway when
she pulled quickly away from a stop sign “to beat the truck on the road”, only
there was a bike on the road too. And she never looked. She got a ticket. Our
lives have changed forever. He was a full-time insurance agent with his own
agency, and a part time Pastor at our church. Left Frontal Lobe initial impact
WITH HELMET. Brain then sloshed into right side as well. Blood clot removed
along with all damaged tissue 21 hours after initial impact.

Multiple broken bones as well as total deafness in right ear now on right
side due to flipping in air and crashing into curb. Today’s Quality of Life? –
“at least you still have your husband”. Um, no, I really don’t. I have a guy
who sits across the living room and plays on the laptop or reads his Bible, but
rarely speaks. Except to get mad. High-Severe Level TBI. No remote memories, No
short memories. Zip. Self-Care for him Good, but he can’t be left alone because
his brain just doesn’t work fast enough if there were to be an emergency, and
he’s almost set the house on fire a few times-and I was here! He WILL talk if I
talk first, but he doesn’t follow what I’m saying for very long. Or, I may
forget and use an idiom or some other figure of speech, forgetting just how
concrete he is now. His “meltdowns” are always my fault, though I’ve come up
with some techniques to hand them back to him and disengage; we’ll see how that
goes. He won’t work ever again. His agency is replacing him with a brand new
agent in a week; though they’ve been very good about sending in subs so we’d
still have an income. That’s done now. I can’t work anymore now; since he can’t
be left alone. I was only part time anyway. Financially, I’m terrified. VA is
supposed to pick up all outside medical expenses incurred – to the tune of
total about 200K. The appeal process is in place right now. But I’ve done
everything I’m supposed to do so it’s up to God, the Disability carrier, and
the VA. Hopefully in that order! I’m exhausted, drained, overloaded, sad,
grieving, and lonely. I feel terribly selfish asking somebody to come hang with
him so I can go, what? to the grocery store? It just feels selfish to me. My
sister is the only one I don’t mind asking for help. I know I know. Well, too
late, burn out has already happened. And…to top that off, our youngest son is
getting married in 3 weeks. Here in our little town. And people will be staying
with us. He doesn’t DO people, even if they ARE his children…

 

Please share your experience at the time you became aware of the
injury?

My boss walked in my backdoor and said “put the phone down, where’s your
purse?” And I knew the central siren, calling the volunteer FD, had been for my
husband. It happened at the END OF OUR ALLEY! I remember my boss(es) – I worked
for both husband and wife, took me up to our ER, and there was a woman from
church coming down the hall for another reason; but all of a sudden I was
surrounded by about 30 folks from our church. I didn’t know, that across the
hall, my husband had crashed 3 different times, needing the crash cart, 4 units
of blood, his lung sucked back open, etc. My BOSS knew it, cuz he was out in
the hall, but he’s never talked about it. They flew him down to Great Falls, MT
where a trauma surgeon and neurosurgeon were standing by. Much later, who knows
how many hours?, they took me back into the ER to see him. Turns out he’d
crashed inside the CT unit too. It was bad. Very VERY Surreal. I felt like I
was in an alternate universe pretty much for the next 2 days.

 

Tell about the experience immediately after the injury. Surgery?
Coma?

Surgery to remove a growing blood clot and the damaged tissue in his left
temporal lobe 21 hours after initial impact. Coma at first, then medically
induced coma for 6 days. Began bringing him out of it Friday afternoon as they
were getting NO neuro responses when coma meds stopped. Not even for pain
stimuli. He extubated himself on Saturday morning, seriously damaging his vocal
cords. However, since his neck was too short for the trach to be put in at
bedside in ICU on Friday as scheduled, the Intensivist began weaning him off
the vent on Friday afternoon, and he was breathing on his own by the time he
twisted himself down to pull out ALL his tubes, including his feeding tube,
which then had to go in as an NG tube, which he pulled out over and over and
over!

 

Tell us about the hospital stay after the survivor was no longer in
a coma

Step-Down Unit – or PCU, Progressive Care. Room directly across from nurses
station. I was warned about foul language, and boy, did he save it up for me!
He didn’t always know my name, but when he was cussing at me, he sure did. They
had him tied to the bed in a posey vest; and he’d slip out of it constantly and
try to get up and walk around without assistance or a walker. FINALLY, after 6
days of me being in that room with him from 6am EVERY DAY until 7 or 8 at
night, the neurosurgeon ordered 1:1 care; a CNA to be with him at all times so
he no longer had to be restrained and I didn’t have to be there every waking
moment. (tho he had “ICU Psychosis” and didn’t sleep through the night for
another month). It started dawning on me just how long this road was gonna be.
They were talking intense in-patient therapy and it would be in a VA hospital
somewhere. The private hospital was good. The 2nd VA hospital we got to turned
out to be better.

 

Tell us about the time in rehabilitation?

Though he first had to be at the Helena, MT VA for 8 days with pretty much
no therapy at all (there is NO ONE TRAINED EXCLUSIVELY IN TBI in the STATE of
MONTANA, in ANY of the Rehab disciplines, INCLUDING, Psychiatry/Psychology!),
finally, on August 6th, the VA flew him to Denver, CO to take one of 11 spots
in their rehab group. The team was incredible. He was in-patient from August
6th through September 20th, then had daily out-patient sessions until November
8th. We were in Denver for 14.5 weeks. (and I was fortunate enough to obtain
living quarters at the Denver Fisher House for all but the first three days of
our time there.) He had physical, occupational, speech/language DAILY, 6 days a
week, and met with a psychologist once a week. The ONLY issue with switching
from in to out-patient, was changing members of the team. Physical parts healed
fairly quickly, but when they moved our PT to a different guy, we’d actually
already worked with him as he was one of the two Vertigo specialists in PT.
Richard’s vertigo did, in fact, turn out to be “central”, meaning “brain-injury
caused”, but with sudden total deafness in his right ear, PLUS testing positive
for BPPV (a type of vertigo Anyone can just wake up with), Patrick the PT had
been called in to consulte with Michaele a few different times, so Richard
sort-of remembered him. We also had to change Occupational therapists, and were
a bit stressed and tense about giving up Jen. Turns out she works with ALL
people Rehab, our new one, Chris’s specialty, for 20 years, is TBI. And she’s
fabulous. And like Michaele in the PT gym, Jen was usually around for a quick
hug. Richard progressed amazingly well. They said they’d never seen anyone with
high- severe TBI be able to regain ‘Executive’ thinking before the basic
thinking. Meaning, he could solve SOME difficult cognitive concept questions,
but he couldn’t cross the street, or remember to brush his teeth. They told us
we would stay in Denver as long as they were seeing a lot of forward progress,
so after 14.5 weeks, they said it was time to fly.

 

Tell us about coming home!

The drive home was long; we took two days to do it with my sister and I
driving. Richard sat in the back and had quiet meltdowns that he wrote in his
journal. Our reception into our small town was marked by signs out on the
highway-BIG ONES, yard signs with balloons all the way into town, all the
marquees in town saying “Welcome Home Richard” – some of them included my name
too – and a giant group of friends on the courthouse lawn as we came by. Since
everyone knew not to inundate us with visitors, that “Mr French-Fry” as his
AWANA kids called him at church, was very different from the one who’d been
flown out on July 10th, people brought meals every other day, and pretty much
left us alone. We had no therapy to go to, we had no “plan for the day”, he
wouldn’t play any games his SLP had suggested, calls with OT and Psych were
frustrating, And then 3 weeks later, on December 5th, we flew back. He had to
have his jaw reconstructed, and he’d gone through all the pre-op on our last
day of therapy, November 8th. We were there for 10 days, during which time, he
also saw the psychologist 3 times and Chris the OT, twice. The SECOND time we
came home, on December 15th, we were a bit more prepared for the reality of
life in our little town…

 

“Please type some single words that describe how TBI has touched
your life. For example: Frightened, confused, sad, etc. Enter as many or as few
words as you like. Separate each word with a comma”

Terror, Surreal, Confused, Info-Seeking(always), Exhaustion, Surreal, Loss,
Grief, Sadness, Yearning, Depression, Disbelief

 

Tell us about life today?

We now speak to our psychologist weekly and fax her things she needs to know
about the day before our ‘phone appointment’. We speak with OT about 2 x a
month. Richard is slowly beginning to initiate more, today he said he was going
to “try to make my own sandwich”, and he did it. He’s developing a “stop”
button for his meltdowns. Baby Steps.

 

What do you want to tell others going through the same process?
Treatments, understandings and actions that made a difference?

These seven words: “IT WILL TAKE TIME” and “WE DON’T KNOW” will be the most
beautiful and horrible words in your vocabulary.

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