Sunday, December 13, 2009
Saturday, November 7, 2009
The comment contained several concerned inquiries
about Daniel and the frustration of not seeing new
updates. Like Binuelos, many who check the blog
everyday, experience dismay and apprehension with
the lack of news. Two weeks without an update
certainly has a way of eroding hopes.
It is our responsibility to support the many who,
because of time and distance, see the blog as their
only contact with Daniel and his family.
Daniel's condition has not regressed in that he has
not experienced the recurring fevers, his weight has
stabilized, the Baclofen pump is functioning properly.
However, his progress with speech therapy and
associated indicators has not displayed any
significant change. Swallowing and possibly using
vocal chords has not been successful as yet.
Daniel is still at Village Square/Kindred in San
Marcos. Cathy, Margarita, and other family members
are very satisfied with the care and treatment offered
by this facility. They have been advised by Daniel's
insurance company that they are evaluating his
condition and need for the level of care offered by
Village Square/Kindred. They will determine if he
will remain here or will be moved, the decision may
come as early as November 14, 2009.
Take care of one another.....
Monday, October 26, 2009
satellite Internet technologies make this post
possible. Daniel's mother Margarita is there
at Kindred in San Marcos, cellular phone in
hand, and I am south of a fishing port on the
shore of the Gulf of California in Baja California,
Mexico. I post this message with the help of
solar panels and batteries powering my laptop
and transmitting it to a tiny satellite up there
somewhere in the backdrop of our galaxy and
Margarita reports that the Baclofen is giving
Daniel respite from the posturing, he is definite-
ly more relaxed, rested, and this has facilitated
more progress with physical therapy. He is able to
sit for longer periods. This has enabled family and
friends to take him out to the patio more often for
fresh air and natural light. Daniel's brother, Victor,
assesses Daniel's strength and takes him for
extended tours of the hospital grounds outdoors
Changes that were made to his nutritional diet
resulted in a one pound weight gain. Small but
significant incremental steps. Once he is able to
swallow puree he will definitely put on more
pounds. The physical therapy will keep him flexible
and prevent atrophy.
As most of you know, Daniel has been a strong
supporter of Barack Obama. Margarita had the
television news on when a sound bite of Pres. Obama
making some remarks seemed to catch Daniel's ear.
It appeared that Daniel did a 'double take' to catch
a glimpse of the image of Obama on the screen!
There are thousands of 'blogs' on the Internet dealing
with every imaginable topic under the sun. Recently I
have been reading blogs posted by families of patients
with brain trauma injuries. They are very informative
and consoling in that these families have traveled this
same journey and want to share their experiences of
fear, anguish, adaptation & adjustment, hope and faith.
Each and every family shared stories of dealing with
mindless insurance companies and the inhumanity of
their profit driven policies. Families are forced to move
loved ones from one facility to another at the dictate of
insurance company claims adjustors. An all too real
story of frustration and seemingly endless battles putting
families under more duress in stressful times.
Many of their loved ones were at various stages of coma
or in their second, third, or fourth year of rehabilitation.
Almost all have shared that the first prognosis given by
neurosurgeons was bleak and without hope.
Understandably, doctors are faced with many
unpredictable factors and avoid giving loved ones false
hopes. Those families took the dire prognosis with
mixed emotions and set out in heroic ways to intervene
and give their loved one a fighting chance to return to
some degree of normality.
There is one recurring theme or stream of advice that I
found in all these blogs, the urgent message from
families and the victims of brain trauma:
'Don't give up!', 'Don't quit!'
It has taken some of the patients a year or two or
more to regain consciousness, it has taken another
year or more to regain speech, it has taken a year or
more to learn to walk, .....all those attributes that we
take for granted loom as multiple marathons for
patient and family alike. One young male patient
relates that over the arduous span of three years
many of his friendships fell by the wayside. This
journey has taken it's toll on everyone, but we shall
continue to stand by Daniel.
Take care of one another..... value health.
Sunday, October 18, 2009
you observed a medical condition called decorticate
posturing. Simply, this is involuntary muscle
contractions causing a patient to have arms flexed,
or bent inward on the chest, the hands are clenched
into fists, and the legs extended and feet
turned inward. Another part of the posturing is a
condition called 'opisthotonos' in which the head
and back are arched backward.
All of this is related to brain trauma injury, BTI,
stemming from the aneurysm, bleeding, and the
pressure exerted on the brain back on April 28
and 29 th. Seeing Daniel in this condition
motivated many visitors to inquire as to what
could be done.
Fortunately, there is a procedure to alleviate the
cause and produce remarkable effects with patients
suffering from BTI and other afflictions. The
procedure is called ITB for Intrathecal Baclofen Pump.
Again, to simplify this explanation, a small electronic
pump is surgically placed under the skin below the
belt line in the lower abdomen.
Baclofen is a muscle relaxer and an anti-spastic agent.
Baclofen is used to treat muscle symptoms caused by
multiple sclerosis, cerebral palsy, including spasm,
pain, and stiffness.
A catheter, small tube, is inserted through the
intrathecal space surrounding the spinal cord,
entering the lower back and inserted upward.
The pump, a 20 or 40 ml reservoir of Baclofen, is
programmed to release small doses to relax his
muscles. The dose is adjusted with radio telemetry,
an application of physics and the science of radio
waves, wireless communications.
Daniel now has the pump, the results in Daniel's case
are reported to be very positive, he is more relaxed
and alert. This procedure was performed Oct. 13th at
In addition, the registered dietician has increased
Daniel's caloric intake to help him regain weight.
Daniel's tenacious spirit has cleared another hurdle.
All of us are fortunate to live in an age where afflictions
such as decorticate posturning, cerebral palsy, multiple
sclerosis, muscle spasticity, and other neurological
problems are the subjects of intense medical research.
Credit scientific research for this discovery, the
technology of the ITB - Intrathecal Baclofen Pump,
that has brought relief and eliminated much suffering
for tens of thousands of patients. This new threshold
will support further efforts to re-teach Daniel to
swallow, maintain flexibility for physical therapy,
and facilitate improved speech therapy.
As late as the middle ages, and for centuries leading
up to and beyond the 15th century, people with such
afflictions were deemed to be possessed by demons.
Tragically, many were brought before the Holy
Inquisition of the Catholic faith. The afflicted were
subjected to exorcisms. Unable to drive out alleged
demons, the person was tortured along with
heretics, rebels, witches, homosexuals, and pagans.
The fate of all these people was to be burned publicly
at the stake.
Thankfully, the age of reason has prevailed.
Take care of one another,
Monday, October 5, 2009
and in the hearts of all of us who love you since
suffering through your terrible ordeal. I know in
my heart that you're only temporarily gone from
your life and that you will be back--
the same guy we all know and love--eventually.
However long it takes, we will all stay strong,
positive, and hopeful in the knowledge that our
prayers will be answered. I wrote the following
poem with the certainty that you, yourself,
will read it and know that you touched the
lives of many! May God continue to bless you
with progress and then bless us with you!
While You Were Sleeping . . .
While you were sleeping for so many weeks
I witnessed the manner in which the Lord speaks.
That wonderful spirit with which we’re endowed
The one that insists that defeat’s not allowed,
Rose up to unite us, encouraging hope.
And gave us the strength that we needed to cope.
It manifested in so many ways,
In kind words and good deeds for so many days.
A testament, Daniel, to the person you are.
In so many lives, you’re a radiant star.
Your trial--I‘m convinced--had a purpose for all.
The Spirit had urged us to answer His call
For human compassion and unbounded love
Such as we’re blessed with from Him up above.
So many hearts overflowed with concern.
For a speedy recov’ry did every heart yearn.
We never let go of our pow’rful conviction
That full recovery’d be your benediction.
And while you were sleeping, some great things transpired.
Your family stepped up in some ways we admired.
Your loving big brother created a blog.
On which our emotions and thoughts we could log.
Your beautiful Cathy--a jewel among wives--
Made sure that this trial wouldn‘t crush your kids‘ lives.
Your ‘lil gal, Olivia, in May was confirmed.
Her faith in the Good Lord above reaffirmed.
Although what has happened has taken its toll
Nayeli still managed to score her first goal.
Danielito and his team--such superb ‘lil jocks--
“Green Gold Champs of ’09, the Temecula Hawks!!!”
Your mom, dad, and siblings stayed strong through this fight.
They knew, in the end, all would turn out just right!
All of this proves that you’re made of great stuff.
And your family, just like you, remained very tough.
You know what they say when the going gets rough!
We witnessed that courage and faith are enough.
This reminded us faith is so crucial in life,
In conquering every occurrence of strife.
When life deals us seemingly unconquerable tests,
His mercy is wherein our victory rests.
And in your resilience and strength we believed
And knew your recovery would be achieved.
We never let go of that vision of you
Involved in those things that you so love to do.
Hiking through mountains and wilderness trails.
Mentoring students with all that entails.
Working on mast’ring the art of jiu-jitsu
Your chosen sport-- that we all know--sure fits you.
Travelin’ to Latin American places
Feeling ONE with those wonderful, brown, noble faces.
Such a wonderful life you enjoyed ‘til the day
We all prayed you wouldn’t be taken away.
When you pulled yourself out of the depths of defeat
We knew that this foe you’d eventually beat.
So none of us doubted that all would end well,
Leaving us with a great story to tell
Of adversity conquered, calamity foiled,
Misfortune torn down and hopelessness spoiled.
We faced them with fortitude powered by God
Upon them we steadfastly, fearlessly trod.
We knew you would make it. We know your resolve.
Despite all the struggles that this would involve.
You’re strong and determined; you value your life.
You treasure your kids and your beautiful wife.
Your family’s important and so’s your career.
There’re so many things you enjoy and hold dear.
So we trusted in you and your strength from the Lord.
Your vigorous fight in all hearts struck a chord.
The odds were against you, the news very bleak.
New challenges rose up each day every week.
You were relentless in fighting this fight.
You overtook hurdles each day and each night.
Rather than choose someone thought of by few,
To make a strong statement, the Good Lord chose you.
I wondered and wondered why this thing occurred
And finally concluded, “He had to be heard!”
He had to remind us that He’s always there,
With His arms around us, there’s naught we can’t bear.
In life when we suffer through many ordeals
He is the One by which misery heals.
With people in whose lives you’ve played a strong role,
The Lord was the One who could fill up the hole.
The Spirit reminded us all of this fact
And knew that you, Daniel, would have that impact.
We’re, all of us, children of God up above.
All blessed with the will to do good for His love.
Together we’re bigger than each one apart.
We’re all of one mind, of one soul, of one heart
And as such there’s nothing that we can’t achieve
Because in the Good Lord above we believe.
By Maria E. Alvarado
Saturday, September 26, 2009
Daniel for independent living, one immediate
goal is to eliminate the intra-venous drip of
saline for hydration. Another benefit of this
step is that it eliminates an area that is a
source of possible infections. Daniel will
receive liquid hydration through the catheter
to his stomach which is used for nutrient
A reminder that there is no longer any
risk in regards to the bout Daniel had with
shingles. Also, the urinary tract infection
has been treated and is history now.
This morning, Daniel had some 'patio
time' with Diana, Alfredo, Margarita, Cristina,
Pat Savas, Tia Chita and Tio Tzal.
Daniel is still holding his own. There have
been numerous reports of a very small sense
of awareness on his part when someone has
mentioned certain topics or events. We're all
searching for a word or phrase or anecdote
that might trigger a cognitive flash or response.
Keep trying. Auditory or verbal stimulus is easy
and inexpensive, and as family and friends, we
we have shared experiences and recognizable
voices...so please keep those positive words
of reminiscence and encouragement flowing.
There are medical studies under way all over
the world addressing this problem. Brain trauma
studies emanate from the medical science fields
of neurology, neurobiology, psychiatry, and
combinations of those fields. Recent develop-
ments in stem cell applications hold many
exciting possibilities. We continue to scan the
research, read, and network with families who
have traveled this road.
It is human nature to measure success with
achieving short term goals. That is good.
Success with long term goals requires great
perseverance. This is admirable.
The struggle for a year or two or more
will find the strongest of us.
...."These are the indispensable ones". Brecht.
Take care of one another......
Monday, September 21, 2009
Friday, September 18, 2009
Trying to provide an update to keep the
blog current and relevant. Cathy reports
that Daniel experienced a mild seizure three
days ago. No indication of cause or after effects
as of this post. Also, Daniel has had a minor
urinary tract infection, now receiving medication.
Cathy advises taking precautions during visits
this week & next, as Daniel has a mild localized
episode of a form of Chicken pox called shingles.
Indications are that this is stress related. Please
check at nurses station on status prior to visit.
For those of you trying to balance work, school,
managing kids in sports, mortgages/rent, repairs,
commuting, budgets, and other family responsibilities
.....it is by any standard, no easy task. The economy
has exacerbated your struggle. Keep your priorities
in order....easier said than done.
Cathy contends with all of the above and more.
She relies on the great support group of family and
friends, among them, Michelle, Diana, Sara and Sarah,
Irene, and others, too many to mention here.
Their presence is invaluable. A brief word of
appreciation for all that make time to help.
Thank you and keep up the good work.
Take care of one another.....
Friday, September 11, 2009
had a picture perfect landing at Edwards Air
Force Base in Palmdale, California. Almost 14
days in space connected to the International
Space Station. The astronauts are safe and now
flying to Houston for debriefing before rejoining
their families. Welcome home Jose and Danny.
Wednesday, September 9, 2009
Cathy asks that no photos of Daniel be taken or
posted until Daniel can speak to that request.
Jerry Horner's daughter, Michelle and her husband
Spencer Ford visited Daniel. They are from British
Columbia, Canada. They gave Cathy and Daniel three
vials of anointing oils from Jerusalem, Israel. used in
rites and blessings of the Christian faith.
Cathy has scheduled massage and reflexology sessions
for Daniel. They begin next week.
While visiting, Daniel had his daily speech and physical
Gave Daniel an update on all World Cup qualifying
matches still going on. The FIFA World Cup will be in
South Africa in 2010. Just sixteen (16) years after the
end of apartheid in 1994! That year marked the end or
46 years of inhumane and brutal 'legal' racial segregation.
Racial segregation in South Africa began in colonial times.
Nelson Mandela was elected president on April 27, 1994,
after 27 years of incarceration as a political prisoner.
Monday, September 7, 2009
My last post was 7 days ago, Sept. 1.
Today Bermuda, Canada, and the U.S.
celebrate Labor Day.
The real and original day commemorating
workers and their achievements is May 1,
celebrated by all nations except the 3 mentioned
I bring this out as I know Daniel is very much
aware of this fact. As he is a student of Latin
American history and the movements for social
and economic justice, I know he would take the
time to explain this to his children.
Among the achievements of workers are: the 8
hour day, abolishment of child labor, worker
safety, minimum wage, right to organize, to name
but a few. The struggle continues. ----------------->
Get up, stand up: stand up for your rights!
Get up, stand up: dont give up the fight!
* * * * * * Bob Marley & Peter Tosh 1973 * * * * *
I have taken this opportunity to enter this post to
create a more recent window to add comments
about your visit with Daniel or related information.
Take care of one another.....
Tuesday, September 1, 2009
is not lacking for family and friends.
Margarita kept watch over night and went off
to work in Poway. At about 8:00 AM, Nando
and Alfredo made time to help Betty place
Daniel in a wheel chair for some 'patio time',
a little sun, cool shade, sounds of the city, the
fragrance of pine trees, and fresh air. Not exactly
the high Sierra's, but a welcome break from
Nando found a way to break away from his
classroom and run over here to voice reassurance
to Daniel of his good fortune of landing a teaching
position so close. Timing is everything! Off he
went back to his classroom, telling Daniel he'd
be right back.
Maria and I showed up in time to assist Alfredo
in rolling Daniel to the patio. Just as we settled in
under an umbrella, Michelle pops in with her
Starbucks in hand and a bright smile to brighten
up the patio even more. Michelle's faith has a
way of releasing those endorphins that give her
limitless energy. It ain't caffeine.
The hand and foot massages began with
encouraging words to Daniel by all of us.
The consensus is that Daniel is strong and
showing no weakness in the long process of
recovery. His immune system has not been
compromised adversely by this challenge.
Again, we attribute this to his strength and
will to live.
Yesterday, Cathy picked up scissors and
comb and gave Daniel a neat hair cut! He
is looking good like I've observed months
ago: Calm, dark, and handsome!
Take care of one another. Stay healthy.
Friday, August 28, 2009
The space shuttle Discovery STS 128, with a
crew of 7 astronauts are in orbit on a
rendezvous with the International Space Station.
On board are two members dear to Daniel
and all of us: Jose Hernandez & Danny Olivas.
You can follow their mission on:
www.nasa.gov/shuttle/mission Check out
'Heard it thru the grapevine', as
Marvin Gaye used to sing....... but Marvin
sang about love lost. What I've heard is 'one
word' that strengthens our hopes! Michelle,
was doing PT on Daniel's foot and ankle when
he vocalized or made a sound for the first time!
Much to her surprize she moved to face him and
tell him she heard him say something. At that
point Daniel uttered another sound which
sounded like 'Hi' or 'Ay'!! This was an actual
response or an attempt to respond to someone's
Michelle called Cathy and Margarita with the
startling news. The phone was placed near his
ear and each time Daniel made an effort to
respond to either Cathy or Margarita's voice.
The speech therapist reports that the therapy
is making progress, he will open his mouth when
she asks him. Besides the daily oral hygiene,
Daniel is asked to move his tongue, lips, and to
swallow. He is slowly re-learning these basic
actions. Steady interaction by the therapist is
showing progess, the therapy includes flavored
swabs, minute quantities of flavored liquid to
stimulate the swallowing reflex, all of this with
simple but clear verbal requests.
Almost daily now, the nurses-Cathy-Michelle
Margarita have been taking Daniel outside to
the patio for fresh air and sunshine! A much
needed change of scenery and the benefit of
physically sitting up and the use of muscle
groups that have been idle too long, another
form of therapy. Margarita reports that he
actually turned and appeared to listen to the
sounds of the San Marcos High School
Marching band rehearsing across the street!
The drum and brass sections were generating
plenty of vibrations!
Daniel has been re-gaining weight! The gains
are small, but it will strengthen him for more
It has been 122 days since the trauma,
the patience and love displayed by family,
friends, co-workers, nurses, and therapists,
has been admirable and commendable.
SPORTS: Chula Vista advances to the semi-
final this Saturday against San Antonio TX.
Mexico has advanced in the international
bracket to play Taiwan in that semi-final.
Who knows, it may be Mexico vs. Chula
Vista in the final.
SPACE SHUTTLE: Looks like the launch will
be tonight at 8:59 pm, PST, which is 11:00 pm,
EST. Valve issues have been corrected and
fueling is in progress at 2:45 pm pst. If you
receive the NASA channel you can view the
crew actually suiting up and entering the
shuttle LIVE!! Get your kids to watch this!
Is this exciting or what??
Take care of one another and eat healthy.
Wednesday, August 26, 2009
Monday, August 24, 2009
With his eyes open he appears to be searching
or seeking to comprehend his surroundings and
sounds. We speak to him or read and hope that
his brain is slowly finding the pathways to process
the stimuli. It is very noticeable when the speech
therapist, Cathy, or Michelle are working with him
on swallowing or moving his tongue or lips. These
are encouraging signs and it more convincing that
the road to recovery will be long and demanding.
Cathy, Michelle, Margarita and others are trying
re-establish contact with Daniel's neuro-surgeon or
bring in another neurologist to make another
assessment about Daniel's progress and also the
state of the shunt.
Cathy and most families are in the throes of the
annual ritual of enrolling children in school for the
fall semester. As you know, school supplies, clothes,
schedules, new teachers, maybe even a new school,
bus schedules, etc. etc. No small task to be sure,
Cathy is doing all of the above after having four
wisdom teeth extracted! Wonder Woman!
LATE BREAKING NEWS!
I include the following two items as I am certain
Daniel would be following these events intensely!
SCIENCE FANS: The latest space shuttle launch
(STS 128) will be tonight about 11:30 pm and will
carry 6 astronauts 200 miles into space to hook
up with the International Space Station, taking
supplies and material for more science experiments.
This launch mission has special significance for
our kids: Two astronauts are of Mexican descent-
José M. Hernández (Stockton, CA.) and
John D. "Danny” Olivas (El Paso, TX) !!!!
Arriba Raza! now has a new meaning!
Log onto www.nasa.gov/missions/ for biographies
and photos. There is a lot of excellent stuff on this
website for kids and adults. José Hernández has
created a foundation to reach more elementary
school children of Mexican descent to promote
their interest in science and mathematics. If we
ever wanted good role models or 'hero' figures for
our younger generation, here are two excellent
The launch will be televised on the NASA channel
on DishNet and DirecTV. Worth staying up to
watch or TiVo it for the kids.
SPORTS NEWS: This is for Danielito, Alfredito,
FernDawg, Nayeli, Adan, Gordo, Oscar II, Ariana,
Anahi, Kai (Chuy's son), Dieguito, Yvonne, hmm,
did I leave any chamaco out of this list?
The Chula Vista Little League team is in the World
Series! They are blasting homeruns and crushing
opponents by 10 run margins! Good luck to
these little guys. Also, on the international side
of the tournament is the team from Reynosa,
Mexico! Today they crushed a team from Germany,
13 - 0! Better to play Germany in beisbol, not futbol.
Take care of one another, eat smart and stay healthy.
Tio Tzal and Tia Maria
Wednesday, August 19, 2009
high fevers, last night was no exception. Nurses are
using a 'cooling blanket' to break the fevers. The
blanket looks like bubble wrap, but more durable and
is connected to a refrigeration unit that pumps
cold liquid through chambers.
The speech therapist is now using flavored lollipops
to stimulate the swallowing reflex and movement of
his tongue and lips. Alfredo reports that Daniel is
showing small improvements in swallowing and
In an earlier post I mentioned research in New
Zealand applying stimuli to the 5 senses to patients
in coma. It is a scientific study adhering to strict
The results of stimulating the five senses,
tactil, auditory, visual, taste, and smell have been
inconclusive using a variety of techniques with
patients. They achieved positive results with some
patients in varying degrees of coma, but nothing that
could be successfully replicated on all patients.
Still no word on when Daniel will have the small micro
pump device implanted to introduce small dosages of
Cathy also reports that Daniel has had a small gain in
weight, less than one pound, but a gain rather than
a loss. His doctor at Village Square is Dr. Santos.
S/he has ordered a full blood panel workup. This is a
preventive measure to make sure there is nothing of
a viral or bacterial nature trying to get a foothold
or causing the high fevers. The panel will test for
white cell levels, cholesterol levels, and sediment rates.
Breaking News!! Nando has been hired to teach
Drama at the brand new high tech charter school
just 100 yards from Daniel's room. In fact, the new
structure is visible from Daniel's bed!
Victor and family have returned from their vacation
in NorCal. Welcome home Victor. It's back to the
grind in a few weeks. Alfredo took his son
backpacking in the high Sierra's. No bear or
mountain lion encounters, whew!
Thanks to all who continue to find the time to
visit Daniel during this long recovery journey.
Take care of one another and stay healthy.
Sunday, August 16, 2009
night with patients. Michelle kept watch last
night on our man. This morning Cathy, Michelle,
and Tia Chita, assisted the PT Mark Martinez as
he put Daniel through a serious of moves and
positons to stimulate the muscular and skeletal
systems. Physical therapy improves the circulatory
system and flexibility, in addition it aids in the
prevention of pressure points and bed sores.
Daniel is also receiving speech therapy. Although
he is unable to speak or make vocal sounds at this
time, the very rudimentary actions of moving his
tongue or swallowing are precursors to eventually
regaining speech. With the intensive speech therapy
sessions Daniel is making very small gains. He has
moved his tongue when requested to on several
occasions, it is not consistent but it is a start.
The speech therapist is teaching Daniel to swallow
by placing a small amount of 'lemonaid' on the interior
part of his tongue, at which point she clearly and
firmly asks Daniel to swallow. Those of us here at the
time were surprised to see him actually respond to
the command to swallow. Again, the reaction has not
been consistent, but it is a new and small step forward.
These actions and initial responses to verbal commands
indicate a long and intensive process ahead.
We all feel Daniel is doing his part, he has not regressed
in his state of health. He has lost weight as can be expected.
Where he was 168 lbs. prior to the aneurysm, he now
weighs 121. A significant amount for anyone, however
under the circumstances he has not been able to keep
muscle mass due to lack of exercise. He is receiving
nutritional fluids through a tube/catheter.
The goal is to get Daniel to learn to swallow again and
perhaps take liquified food orally. Arriving at that goal
would surely stabilize his weight and increase his
energy levels and strength, preparing him for extended
and more rigorous physical therapy sessions.
The staff here at Village Square are caring and
very attentive. Hardly an hour goes by without someone
coming in and intervening with their specialty.
RN's, LVN's, CNA's, technicians, therapists, administrators,
and even the maintenace staff keeping the room and
hallways clean and sanitary.
So, Daniel's team has new and committed members, with
his family and friends we are moving forward ever so slowly,
but forward nonetheless. This journey has been a challenge
for everyone, but we are up to the task.
Tuesday, August 11, 2009
Daniel was moved here to San Marcos last
Thursday. He is still experiencing 'storming' and
recurring fevers, other than that his physical
condition remains stable. A normal day, if 'normal'
can be used, has been for him to receive physical
therapy, sitting him up, changing his position in bed,
and close monitoring of his vital signs.
A highlight of his day is the arrival of his nurse,
Betty Kent. She is an outgoing joy filled Panameña
who speaks to Daniel in Spanish and English. She even
sang an old Panamanian salsa number for Daniel
Cathy, Donna, Maria and I, the song was
'El Tambor de la Alegria'.
"Panameña, panameña, panameña vida mia
yo quiero que tú me lleves al tambor de la alegría"
Between that and 'Jammin' with Marley, we should
get Daniel movin'......
Daniel will open his eyes for long periods only to close
them for shorter durations, presumably to avoid
light stimulus. Family and friends have reported that
Daniel has made small attempts to make sounds.
There was some discussion of surgically installing
a micro-pump to feed a muscle relaxant in the area
of the spinal vertebrae to reduce or eliminate the
tension in Daniels upper body. The procedure has
been approved and will be scheduled soon.
There are no restrictions on visitation. To gain access
after 7:00 PM you just need to ring for someone to
open the door.
Daniel has a private room with a view of trees and the
athletic field of a new charter high tech school.
Conveniently, Nando will start teaching Drama
at this school this month.
Nayeli's futbol team the Temecula U-8 Hawks won
their first tournament in Poway. First place trophy,
defeating teams from all over San Diego county.
Danielito's futbol team went to the final's of another
tournament on a game winning goal by our little guy!!!!
In the final, the teams went into overtime where his
team lost a heartbreaker. Second place for Danielito
in this tournament.
Thursday, August 6, 2009
Friday, July 31, 2009
Today's highlight was suppose to carry me to the top of Longs Peak Mountain, which stands at 14, 255 feet. The round trip hike adds up to a leg busting 16 miles. Some dude died of a heart attack last week trying to climb to the peak!!! Yeah, I know I'm not in tip-top form but you know me bro, no me rajo. As the Wu-Tang Clan said, "The hard headed never learn." Don't worry though, to my credit, I have been working out to prepare for the trip and to lose some of my baby fat. Hey, that's what I call it. Long story short, bad weather conditions forced me to reschedule the trip for next week--probably Tuesday. I will write a piece for the blog after I conquer the 14 thousand foot monster.
So for today, I decided to recall some memories—wave them back so to speak. As I was cleaning my closet, I stumbled on to my wedding album. You member, yeah, you member. Good times! Found some great pics to share with everyone. Here is one of Danielito and Maya. Beautiful, just precious these two.
Our wedding wasn't a fancy or high dollar one. For Gods sake, it was held at the Fallbrook Community Center. Damn, I remember back in the day (click) when we crashed weddings, quinceañeras, and baptisms just about every weekend at the FCC. Don't clown now, you all been there. Don't lie. Trying to get in with no invitation and sneaking in through the back door. Trucha, here comes security! Sound familiar? Got to look sharp to impress on the dance floor. Tu sabes, scoping out the ladies, I mean, looking for Cathy and Elena. I swear, honey. Good times Daniel, good times. I'm sure there was some young bucks pulling the same movidas at my wedding--wouldn't have it any other way brother. Check these pics out. Swear, I almost grabbed on to the ceiling beam.
I can always count on you to be in the mix of it! You're clutch.
Good food for the guests, bountiful drinks, musica para toda la noche, and surrounded by family and friends. That's all you need for a good wedding, but more importantly the essentials for great memories.
El Carita Jesus (aka Chewy) giving a reading during the ceremony in Spanish! Good looking dude don't you think Mrs. Miranda.
El Nando y familia. Glad you were all there.
“Keg still kicking boyz need to kill it”
“Work those dancing shoes, baby, cause las rolas sound specially firme tonight"
“A toast to the newly weds--Que se oiga mariachi!!! Que se oiga!!!”
Laughs intermingle and dance as the DJ (click) announces the final set.
“Last call carnal. After party you ask?”
Claro que yes, homie. No last of the Mohicans in this Tribe. We get up before the count reaches ten, so you get better and we will groove to Ozomatli's "After Party" (click) as we drink a couple of coldies.
Until then, here are some more snap shots:
That's my Dog. Cleaning up the Hall to get that deposit back! Oh, yeah, and get to the after party at my uncle Tony's house. You know, keeping the Fallbrook tradition solid: House Party!
Live Life Vega,
Thursday, July 30, 2009
This was our view from atop of El Templo Del Sol in Teotihuacan. We quietly sat there, simply overwhelmed by the surrounding beauty we were in. Soon enough after our arrival to the top, the skies decided to bless us with a light rain to reward us, for a day of long travel in the humidity. It was both a breathtaking and spiritual moment for Daniel and I.
It was October 2002 and we were backpacking through Central Mexico on our way to El Cervantino in Guanajuato. El Cervantino was established in 1972, and Daniel and I had decided it would be really cool to attend the 30th anniversary of the festival. (El Festival Internacional Cervantino es el festival cultural de carácter internacional más importante de México y de América Latina; tiene como propósito propiciar el diálogo de las diversas culturas del mundo, permitir el conocimiento de los procesos de la creación artística contemporánea, contribuir a la formación, actualización y perfeccionamiento de los artistas y públicos mexicanos, coadyuvar a la internacionalización de la producción artística nacional y ser detonador del desarrollo turístico de Guanajuato y México.)
We began our journey in Tijuana, there we boarded a plane with our hiking bags and headed to El Distrito Federal (Mexico City). Our plan was to backpack from El D.F. to El Cervantino in Guanajuato and back, we were going to attempt to see as much as we possibly could in our two weeks in Mexico.
Daniel had his hiking bag, and he borrowed his brother Victor's hiking bag "the bullet" for me, that seemed okay with me. In hindsight, I should have given that more thought. There is a bit of a size differential between Victor and I, so obviously "the bullet" was not a friend of mine during our journey. Nevertheless, we followed our plan and made stops in Teotihuacan, Tula, San Juan Del Rio, Queretaro, Leon, Guanajuato, and San Miguel De Allende. We also cruised into other small villages and cities on our way through, but we had to keep moving in order to get to and from our destination in a timely manner.
When we finally arrived at El Cervantino, we found a hole in the wall above a small tienda where we could stay at for super cheap. Here is why it was cheap, the room had a mechanical witch on a broom on our balcony that swiveled side to side and screamed all night. Oh, and Daniel swore he had bed bugs in his bed. My bed was cool, but I must admit, it was a shithole.
After we got settled in, we headed out to the city and soon realized Guanajuato was inundated with people, most of them drunk, we were somewhat disappointed. We had heard all these awesome things about how artistic and classy the festival was going to be, and when we got there we found just a huge unorganized pediza!
To be continued...
Saturday, July 25, 2009
Ode to Futbol
“Patience, paa-tience, Paaa-tience…
Keep it, Keeep it
You got time, you got time”
The game is very fluid
guys taking breaks as needed
a breather on the way
to get some water.
I watch a pick up game
seemingly simple and informal
soon I’m in awe
players from all over the world, literally:
I counted five or six different races, nationalities.
Old guys playing
with the joy of a child
young guys playing with egos in check
the pace dictated solely by strategy
moving the ball creating space
passing, passing, passing
short distances across to center, or
long and back out to the halfway line
to slow the game down.
“Slow it down!”
“Make him commit, make him commit”
The young, stocky Chinese man
now in enemy territory
moves toward the defender
kicks it sharply to the older Vietnamese man
his hamstring wrapped
cutting towards the goal
just 5 feet away
the goalie freezes
the ball squirts through the narrow goal
small orange cones just 3 feet apart
the quick kick
accurate hard and swift.
The goalkeeper never had a chance.
the tall scrawny white kid
controls the ball
passes unselfishly to the left wing
the forward attacks
the goalkeeper is there
kicks out and towards the middle.
The kid gets the ball again and
this time measured and sure
he delivers a goal
the ball is still rolling
he is pumped, ecstatic even,
yet for all his skill and grace,
He downplays his shot with a soft exuberance.
As if to prove that his earlier goal was no fluke
the Vietnamese man shows off his dexterity again:
It’s three on one
move into attack mode
the Goalkeeper is all by himself
he charges the outside forward
to force a play
the left forward passes
the veteran Vietnamese dude
breaks to the goal
he taps the ball with his left foot
absorbing the force of the pass
effortlessly (or so it seemed)
switches the ball to his right foot
for an easy shot with his outside toe
The Goalkeeper had not given up
and was back in his face
to make a play of it…
all in one motion
the Vietnamese man
pulls the ball and scores with a reverse kick behind his body…
feet of fire!
They know the score
They go home,
back to the office,
back to the world of reality
refreshed and ready.
I in turn,
I am completely satisfied,
so glad to have witnessed
such a triumph of the human spirit
to play for the sake of playing
to try because it feels good,
to never give up.
Friday, July 24, 2009
As of today, Daniel continues to have storming episodes. The nurse mentioned he usually has one or two a day, one at night and or one during the day. The storming causes Daniel's heart rate to accelerate, which then causes him to sweat profusely and he then begins to shiver. Dr. Clark reiterates there is no need to panic, although it is not easy to experience this process, it is part of Daniel's healing process and it should be monitored and addressed accordingly. Cooling him down with ice, cold wet cloth towels and if need be a milligram of morphine usually stabilizes him.
Daniel now finds himself completely off any type of breathing assistance and his tracheostomy has been manually plugged. On Monday, Daniel is scheduled to have a tracheostomy decannulation. In other words, they are taking the tube in his neck out and closing him up. Once that hurdle is cleared and all the tests go well, he will also have surgery possibly on Thursday to insert some type of monitoring system, which will automatically release medicine to his body when he has bouts with tension. This mechanism will be inserted somewhere in his lower torso and will help his limbs remain relaxed. The decannulation procedure will be conducted at Kindred, while the second procedure will be done at whichever site Daniel ends up at next week.
It is unfortunate, but due to the desires of Daniel's insurance provider (you guessed it an HMO), Cathy will have to find another facility where Daniel can continue his road to recovery. His time at Kindred Hospital has seen Daniel experience excellent quality of care, but it is obviously not cost efficient enough, so now Cathy has three nursing homes in Escondido to choose from, that is, if all of them have a bed available. If not, then he will go to whichever site has a bed available, thus leaving Cathy without any say in the matter. Dr. Clark has done what he can to have Daniel remain at Kindred, but in the end he said it was the insurance who wants to relocate him by next week. Well, what do we expect when we have a system that prioritizes profit over human lives. I will not take up any more of your time bashing the HMO system, I gladly leave that to all of you.
Regardless of where Daniel is headed, he will have the second procedure conducted by Dr. Clark, possibly some time later in the next week. Best case scenario, Daniel gets to stay at Kindred for another week, but I doubt it. Right now it looks like Tuesday or Wednesday he might be relocated.
We will keep you posted on which of the Nursing homes Daniel is relocated to.
Take care of one another,
Saturday, July 18, 2009
Happy Birthday Daniel,
Typically a phone call takes place on this day and I give you a hard time concerning your age. This year, however, there won’t be a phone call, no jokes, no conversation…
How do I celebrate this day? What gift can I possibly offer? I really don’t have an answer. What I do know, Daniel, is that I’ve learned some things from this ordeal and your recovery: don’t take life for granted. Enjoy life. Embrace your loved ones daily. Taste the potential of every breath as one faces the gift of enveloped in every sunrise. Do something memorable worth remembering, however simple the task at hand might be. Yes, this is my gift to you: I will fulfill the promise of each day and sometime in the near future we will sit down with beers in hand and I’ll share these memories with you.
This week, for instance, I decided to get off my ass and hit the Big Thompson River for some fly-fishing. I must admit, I prefer fishing lakes rather than rivers. Fishing rivers like the Big Thompson takes a certain degree of experience and skill to catch anything. Lakes, well, if you are not landing anything with the fly rod one simply drops a hook wrapped in power bait y ya estubo. This time around, I decided to man up and get in the river. Dude, the drive alone took my breath away as I headed up the mountain. Check these picks out, only 40 minutes away from where I live!!!
The day started out good. Spotted some big Brown Trout as soon as I got there. Man, Browns are powerful fighters and if your not careful they will snap your line. Remember, fly line is thin and it’s not about overpowering the fish—which is the opposite of salt-water fishing. It’s all about keeping the right amount of tension on the line to get the fish tired in order to reel it in. Anyhow, I located the fish, placed myself about nine feet behind it, and proceeded to cast my fly upriver to let the current bring the fly to the fish. Sounds simple enough. But two hours later, about 3 to 4 tangles that tested my patience, and the loss of about $20 in flies due to underwater snags y NADA, not one bite! I swear I wanted to break my rod and pick up some rocks to stone the darn fish.
Fortunately for me, there was an old timer that was having some laughs at my expense. He must have been checking me out for a while. The guy, Steve, walked over to me and initiated some small talk. Asked where I was from, my job, and finally inquired about the pinche flies I was using. Steve saw how frustrated I was because he suggested I take a break and drink a beer with him. I agreed. After the chela, Steve revealed he managed a fly shop in Estes Park and use to be a fishing guide when he was younger. Shit, the dude offered to give me some free lessons. My luck was turning homie, como la vez. In one hour, I landed three fish. The first being a 16-inch Brown Trout!!! Not bad for my first fish on the river. Here is the fly I caught it with and the fish.
Check this out, turns out Steve’s son owns the fly shop he manages, Kirks Fly Shop. Yeah, Steve is the owner’s father!!! What are the odds of running into a guy who offers you a beer and lessons. One would think luck was with me that day. Getting free fly-fishing lessons that normally run $300 a day from a veteran guide. But you know what, I don’t think it was luck. This whole experience was made possible because I got off my ass, took advantage of a beautiful day, and opened myself to what ever the day threw at me. Luck, not a chance. I hope to relate similar stories, adventures, and maybe even some mishaps along the way.
As I promised, I’ll try to live up to the potential of each day and continue to wait patiently throughout your recovery.
Happy Birthday Brother,
Friday, July 17, 2009
Medication and Dosage:
Is Daniel's medication interfering with his recovery?
Why morphine and not adavant?
Morphine is preferred instead of adavant because adavant is a much more potent medication, and the amount of morphine being given to Daniel is minimal. The dosage is 2 milligrams of morphine for pain. If we give an individual with no health issues 2 milligrams of morphine it would not cause the person to fall asleep, it would most likely make them feel "happy" for a while, now if we were to give a person 2 milligrams of adavant, it would definitely knock them out for a while. The dosage Daniel receives does not impair his recovery, it is only for pain purposes and is only to be given to him when necessary. To avoid any misreading of his level of response, Daniel is not checked after medication has been provided.
Increased Heart Rate:
What is happening when Daniel's heart rate increases so much?
His bouts with an increased heart rate are a result of discomfort he is experiencing at the time. When he feels discomfort his body reacts by triggering adrenaline to his heart, thus his heart rate increases significantly. We should not be too concerned, it would only be a concern if Daniel was in his 50's and had previous heart issues, but that is not the case. Daniel is young and his heart is healthy, so he can handle his heart rate fluctuating like it does. It is similar to when we exercise, by doing so our body triggers adrenaline to our heart and the rate increases by a significant amount, and if we exercise for hours, it will remain at that increased rate with no danger to our health.
Dr. Clark was happy to note:
While at Kindred, Daniel's blood work has continually shown a normal count of white blood cells, this means he has had no infections of significance. If he had an infection his white blood cell level would fluctuate.
Later that morning, Daniel's speech therapist (Deb) came in and worked with him while we observed. Deb used small pieces of ice in a cup to get Daniel to react to the cold cup in his hand and then she got him to swallow the melted ice on his own. It was good to see Daniel respond to Deb's therapeutic methods. Deb went on to explain that she believes Daniel is currently suffering from apraxia.
Apraxia is a neurological disorder characterized by loss of the ability to execute or carry out learned purposeful movements, despite having the desire and the physical ability to perform the movements. It is a disorder of motor planning which may be acquired by lesions in the language-dominant (usually left) hemisphere of the brain.
Deb will continue to work with Daniel to help him improve on this.
Daniel's 35th Birthday is tomorrow July 18th 2009.
Happy Birthday Homie.
Thursday, July 16, 2009
#37 "Love me for who I am today. Don't hold me to being the person I was before. I have a different brain now."
The quotes above help me to understand my own personal struggle to understand my new relationship with Daniel and the present circumstances.
Sometimes I feel a certain nostalgia (if not downright sadness) when I remember the special moments with Daniel before his injury. Like Alfredo and his hikes in the Sierras we have all shared special moments with Daniel. I remember when I last spoke to him, when I went over to pick up Adan after a sleepover with his cousin. I remember with vivid detail our exchange at my youngest daughter Anahi's birthday party upon Daniel and his family's return from San Felipe.
Now, as Daniel's Birthday approaches there are many things to celebrate. Alfredo notices that Daniel is showing different emotions lately. It is very unsettling to see Daniel scared or frightened for example. We all know Daniel to be fearless. Then, we reassure him with our own loving voices of the possibilities that exist for him and the treasures that await him. The point is, Daniel may not be processing information the way he had before his injury, but he is obviously tending to his environment with the parts of his brain that function well. He can lift and turn his head and he notices when you are present, visiting with him and talking to him. Daniel is processing lots of stuff.
#32: "Focus on what I can do rather than bemoan what I cannot do."
Congratulations to all who can make it down to Kindred and notice the things Daniel can do.
Tuesday, July 14, 2009
Monday, July 13, 2009
Sunday afternoon I got the opportunity to spend some time with Daniel and his brother Victor at Kindred Hospital, we updated Daniel on current events (mostly athletic in nature), family accomplishments (Happy 35th Birthday Fern!) and reassured him that we will be patiently waiting as he travels his road to recovery.
Daniel was having some issues with his temperature earlier in the day, but by the afternoon his temperature had stabilized. Overall, Daniel remains in good condition, he is breathing on his own and has minimal medicinal assistance. His food and nutritional needs remain via an IV to his stomach. Physically, he has thinned out a bit, but he looks good considering his current situation. The doctor has reiterated that anyone who remains bed ridden for the amount of time Daniel has, will definitely be susceptible to some minor side effects such as bed rashes, infections due to the trich and so on. That just means we should do our best to be vigilant if we suspect Daniel is dealing with any of these issues, and make sure the medical team is aware and taking the necessary measures to assist Daniel.
"Times of great calamity and confusion have ever been productive of the greatest minds. The purest ore is produced from the hottest furnace, and the brightest thunderbolt is elicited from the darkest storm." -Charles Caleb Colton
Wednesday, July 8, 2009
I visited Daniel last on Monday night and stayed pretty late. He's on antibiotics for a bacteria found around his trach-tube. It is not uncommon for the area around a trach tube to get infected and it is nothing serious. The other cultures from blood and (uh hum) urine samples were negative which means Daniel is healthy on the inside. And the MRSA he brought with him from Sharp is also gone.
I excercised him--range of motion with his arms trying to rotate his shoulders and get him to extend his arms to loosen his elbow joints. The charts are useful for the proper technique and getting a better stretch out of him.
I also turned his head left and right gently and with "permission" from Daniel. The motion must have triggered something because he began to do it on his own. I explained to him that he was turning his head. I then asked him to lift his head and gently helped him do this. To my amazement, Daniel lifted his head higher than a 45 degree angle as though he were attempting to sit upright. He did this unassisted and held it for a good 20 seconds!
I spoke with Daniel trying to take advantage of his alertness. However, I may have overdone it. Patients of stroke have reported that talking actually drains their energy, the life force they need to heal. So how much is enough or too much? I don't have an answer for this but since Daniel is unable to tell us on his own what he needs we must be sensitive and not indulge ourselves in excessive talking. As a rule visitations should be brief.
Today I am excited because I am off to view the Bodies exhibit at Balboa with my kids and nephews: Olivia, Danielito and Nayeli included. We have so much to learn.
Monday, July 6, 2009
Good morning all. I was able to see Daniel on Saturday for a short while. He was responsive to voices. My perception is that light affects him very much. His eyes get very tired when they are exposed to light. When I go visit, I close the blinds near his bed and make sure there is no light directly hitting his eyes. By my estimation, he tends to tune out or sleep more when there is more sound in the room than when there is not. I believe he can discriminate a voice from background noise because of our eye contact when I speak to him directly, clearly and softly. He is also able to lift his head! He lifted his head slightly 2 or 3 times in my presence. I didn't request this he did it on his own. I congratulated and encouraged him. I will celebrate every effort!
On Sunday, Alfredito, Daniels Godson, hit an opposite-field homerun that drove in 3 runs for his Little League All Star team. Vista Nationals beat RBV 11 - 1. Carmen and I were very proud, and I can't wait to tell Daniel! Their next game is against Oceanside on Tuesday at 5pm. The tournament is hosted by Oceanside Amercian Little League which plays at the Ron Ortega Park in Oceanside right off interstate 5. Call Alfredo or Diana for more info.
Friday, July 3, 2009
--Jill Taylor's Forty Things I Needed Most
"To the right mind, no time exists other than the present moment, and each moment is vibrant with sensation. Life or death occurs in the present moment. The experience of joy happens in the present moment. Our perception and experience of connection with something that is greater than ourelves occurs in the present moment. To our right mind, the moment of now is timeless and abundant."
from My Stroke of Insight, by Jill Taylor
The author of the above quotes is a neuroscientist and a survivor of stroke. An aneurysm such as the one Daniel has experienced is a stroke. Following surgery it took her 8 years to completely recover all her physical and mental functions. The brain has the ability to repair, replace and retrain its nueral circuitry. It has incredible plasticity. For an article on plasticity, please click on The Vega family picture to the right.
Yesterday I spent 8 hours with Daniel. Daniels heartrate increases periodically; when it goes too high, 130 BPM or higher, Daniel gets some medicine to help him calm down. Doctor Wong says that it is normal for Daniel's heartrate to increase slightly in response to therapy or the activity that surrounds him. However, a significant increase means that Daniel gets a dose of medicine to help him regulate his heartrate, breathing and body. Daniel was running a fever off and on which was treated with tylenol. The nurse took some cultures to check for infections. It takes several days to get the results back.
Tuesday, June 30, 2009
for many days since late June. After reading
the Posts over the last week we've been sincerely
moved by your dedication to your brother. This
love and compassion reminded us of a song from
the 60's by a group called the Hollie's. This song
exemplifies what all of you are about!
He Ain't Heavy, He's my brother
The road is long
With many a winding turn
That leads us to who knows where
Who knows when
But I'm strong
Strong enough to carry him
He ain't heavy, he's my brother
So on we go
His welfare is of my concern
No burden is he to bear
We'll get there
For I know
He would not encumber me
He ain't heavy, he's my brother
If I'm laden at all
I'm laden with sadness
That everyone's heart
Isn't filled with the gladness
Of love for one another
It's a long, long road
From which there is no return
While we're on the way to there
Why not share
And the load
Doesn't weigh me down at all
He ain't heavy, he's my brother
Monday, June 29, 2009
As I read, two skilled therapists entered and quickly the room came to life. Isabella, the occupational therapist, jotted down some notes about Daniel's interests including hiking and traveling. It turns out that she has a shared interest with Daniel because she also knows jiu jitsu. Theresa, the physical therapist, also showed a genuine interest in Daniel and his family. Together they make a confident and expert team.
Working in tandem, the skilled therapists, quickly began to evaluate Daniel. He favors his left side they said. And that we should work with him to shift his focus to his right side; he needs to pay attention to his right side. On the PT side: Daniel is hyper extending...he is pushing his legs out. Daniel is very tight! His hip flexion was at 90 degrees which is good. His knees bent a little less than that, but his ankles are especially tight. His toes are pointing downward towards the foot of the bed constantly. This hyperextension can lead to contracture: the permanent shortening of muscles or tendons due to continued stress exerted on that muscle or tendon. Contracture cannot be excercized or stretched away.
The restorative therapists will work with Daniel for approximately 30 to 40 minutes a day, but this is not nearly enough!
We can help with range of motion excercises. Look for the diagrams that show how to perform these excercises on the cork-board with the family pictures. Or ask anyone who has done them to teach you how to do them, they are simple and easy to learn. As the RT puts it, WHEN Daniel is ready to walk, the more flexibility he has the better.
The highlight of my visit today was when I was able to sit next to Daniel side by side holding him up along with the help of the therapists (as they evaluated). I had my arm around him as I propped him up and his face was next to mine. Are words necessary to describe the joy of once again being able to sit next to my brother, shoulder to shoulder, heart to heart, in unity of spirit?
Skilled therapy really begins once Daniel is able to participate even minimally in his own rehabilitation. When he is able to follow commands and move on his own. Another high point today was that it was evident to the therapists and myself that Daniel was able to loosen his grip when asked: he was able to open and close his left hand on command after several repititions. The lesson here is that Daniel must relearn everything. It is not enough to simply tell him to do something, one must actually help him do it. These repititions will help train his muscles as neurons create new paths and circuits in his brain. Every interaction counts!
Sunday, June 28, 2009
The immediate goal for Daniel is decanulation within 8 to 10 days.. Decanulation means that the trach-tube comes off completely. In order for this to happen Daniel must pass several tests. First, he must be able to breathe on his own without ventilator assist. Next, the RT would attach a one-way valve (known as a pmv or "speaking valve" because it permits patients to speak) that would allow Daniel to exhale through his nose and mouth. If Daniel passes this test, that is if he is able to exhale through nose and mouth, the next step would be to plug the trach entirely to see if Daniel can both inhale and exhale through nose and mouth.
The final most critical test is the swallow test. This test inolves the use of ice chips with food coloring. Daniel is given ice chips through his mouth (I'll bet he would love to taste ice once again, think of how refreshed he will feel) with the hope that Daniel will SWALLOW these into his belly via his esophogus. If, after suctioning his lungs, there is any evidence of food coloring or dye, then the ice has gone down the proverbial "wrong pipe." If this is the case then Daniel will have to practice swallowing--a skill we take for granted and do automatically.
The RT points out that youth is again on Daniel's side. However, because he isn't as "awake" and "alert" as we'd like he cannot consciously correct his swallowing as we do when we begin to choke. So when Daniel finally passes the swallow test and he has been breathing independently then the trach has served its purpose and can be removed. The hole, in his throat, once healed, will hardly be noticed.
Kindred has a very high success rate with this kind of rehabilitation. Then what? Well, Daniel will be evaluated for occupational, physical or speech therapy. Kindred has all of these specialists "in-house." My hope is we'll be able to access these resources for Daniel for some time. Kindred's multi-prong approach to acute care and rehabilitation is perfect for my perfect brother!
Thanks again and with Love,
Saturday, June 27, 2009
Right now Daniel is relaxing listening to Manu Chao. Daniel perks up to sudden noises. When Alfredo arrived at 6pm Daniel sighed happily and his eyes tracked Fredo's voice and movements.
Man Kindred has a homey as in kin kind of feel that belies its corporate, service oriented success. Kindred was #1 on Fortune's The World's Most Admired Companies in the category of Health Care Medical Facilities. 9 criteria are used to rank the most notable companies including innovation,quality of products and social responsibility. Kindred is situated in North Park,and Kindred's nursing staff mirrors the diversty of the community it serves. There are liasons that are active in the community and that assist families in planning for the care of their loved ones.
Kindred is a long term acute care facility: How will we use the resources available to us here at Kindred to plan for Daniel's future?
Thank you to all for your generosity and love. Thanks to the support of friends and family Daniel is still fighting. It is now 8pm and Daniel has been breathing on his own for 13 hrs, again exceeding expectations.