[tri-med] An Update for our littlest Anthony:

To our friends and family close and far - 
 
There has been a storming in heaven and I am thankful for your faith
filled prayers.  For those of you following our journey via e-mail or
telephone, you know we have faced death several times and yet littlest
Anthony continues to breathe again all on his own and fight like the
strong little man he is.  Yes - it is heart wrenching to watch and heart
wrenching to even explain, and I'm sure heart wrenching to even read -
but the truth is . it is a testimony to how strong the will of the human
spirit is and a testimony that our life is from God and not dependent on
anything we do to intervene or not to intervene.  Life is simply sacred.
We are made in the image of our creator and we are not weak.  
 
As my husband and family sit with littlest Anthony, we are faced with
the weakest portions of our being yet are surprisingly experiencing the
strongest of Gods graces.  What an incredible and beautiful blessing to
be experiencing this with God.  I have no doubt that anyone who is
praying through this suffering is receiving less than Gods complete
mercy.  
 
(if the following table is not readable go to our website page titled
'Daily Life with Trisomy 13' for the update at
http://gregoryarritola.tripod.com <http://gregoryarritola.tripod.com/>
) 
 
Here are the issues impacting Anthony's current medical health:      
 
 
WHAT IS HAPPENING?
Confirmed Implications 
for Anthony's Well Being
WHY IS THIS HAPPENING?
Medical Physiology 
and Medical Diagnosis

 
Central Nervous System
 
Anthony has sleep
<http://www.sleepapneainfo.org/?keyword=central-apnea&engine=google&cont
extual=no>  apnea, central apnea and obstructive sleep apnea affecting
his breathing and sleeping patterns with hypoxic
<http://lungdiseases.about.com/od/glossaryofterms/g/hypoxia.htm?terms=hy
poxic>  episodes.  
Anthony appears to go into respiratory arrest yet it has been confirmed
that it is his brain activity that is actually stopping and secondarily
his heart rate slows down but does not stop.  It appears he is exhaling,
turns blue and drops to 0% oxygen, but these are events occurring after
his brain has flat lined.  He has seizure like symptoms in his body but
his brain, in hypoxia, has no activity.  After two to three minutes, he
gasps for air and all nervous system, respiratory and cardiac functions
resume back to normal.  
Anthony has an underdeveloped cerebellum
<http://biology.about.com/gi/dynamic/offsite.htm?site=http://www.newhori
zons.org/neuro/leiner.htm>  and agenesis
<http://biology.about.com/gi/dynamic/offsite.htm?site=http://www.ninds.n
ih.gov/disorders/agenesis/agenesis.htm>  of the corpus callosum that are
believed to the source of this central nervous system disorder.  Anthony
also has seizure disorder.  
 
Shortly after Anthony's birth, physical attributes to his physiology
were noted through a series of non invasive tests, such as MRI, x-ray
and ultra-sound.  
 

 
Digestive
&
Renal
Anthony's digestive system is unstable from the abdominal surgery and
his ostomy sometimes tries to act like a third kidney.  Anthony is
dumping fluids through his ostomy and we are replacing lost fluids
through this central line.    
Anthony is not diagnosed with a Short Gut Syndrome (as doctors first
speculated) but is suffering from secretory
<http://digestive.healthcentersonline.com/digestivesignssymptoms/diarrhe
a4.cfm>  diarrhea with unknown cause.

 
Cardiac
Anthony has Congestive
<http://digestive.healthcentersonline.com/digestivesignssymptoms/diarrhe
a4.cfm>  Heart Failure with hypoxic episodes being managed by medicines
Severe form of congenital ASD and VSD.

 
Pulmonary
Due to Anthony's diagnoses, his lungs can easily get congested so we try
to move him often to avoid fluid build up and keep his lungs open with
preventative breathing treatments to avoid further complications
Anthony has pulmonary
<http://www.americanheart.org/presenter.jhtml?identifier=11076>
hypertension associated with congenital heart disease.
 
In short, Anthony remains strong in his will to survive.  It truly is
the prayers of the faithful that sustain us.  A part of us is living
each day as if it is his last breath - while another part is planning on
how to survive through the tomorrows given our situation.  We are amazed
by the miraculous stories of survivorship shared with us by many
families close and far.  We have many stories that have been shared with
us, amongst a few are stories of amazing NICU moments, birthdays (some
as old as 47 years) and stories of prom dates and employment joys for
these children.  These stories are inspiration to us because as we
learned of our child's Trisomy 13 diagnosis, we were told he was
incompatible with life beyond the womb.  We have mourned the loss of his
future, the loss of our expectations and when we see another family
meeting these normal milestones amongst their Childs "incompatible with
life" diagnosis, we are amazed in Gods ability to prove the world wrong.
Sadly, many of these children do not survive . but for some . they do
survive . and for all these families and ours, I ask your prayers for
peace, courage, strength and the grace of perseverance.  
 
For us and most families of a child diagnosed not to survive life, we
struggle with daily challenges and we take moments of respite in that
God has the absolute dominion over life and death.  Our job as parents
is to care for and comfort these little beings as long or as short as
God has destined them to be with us.  Until the time arrives, our plan
of care for Anthony is to keep him clean, free from infection and free
from pain as much as possible, to provide him nutrition and hydration,
even if through a tube and to allow him to live as normal a life
possible given his medical situation.  As simple as that sounds, it is
harder to carry out in a healthcare system not set up to manage patients
like Anthony.  Our fight is to have our child not treated as a
terminally ill patient in hospice, but as a medically fragile child who
needs ongoing monitoring to compensate for the loss of temporary yet
chronic conditions.  Our second responsibility to Anthony's care is to
surround ourselves with experts as much as possible and to educate
ourselves as much as possible so we can navigate the waters of his
syndrome, his healthcare advocacy along with our mental health and moral
conscience.
 
So with that said, Rick and I have to be prepared for the full spectrum
of life: from funeral arrangements of our infant son, to providing an
appropriate life with our disabled child.  All the while, we remain
responsible for providing a stable family life for Anthony's three older
brothers through these life experiences.  I hope you all realize that I
am sincere when I say THANK YOU FOR YOUR CONTINUED FAITH FILLED PRAYERS.
We are grateful and humbled by all your acts of generosity and kindness
towards our family during this stormy journey.  
 
I thank you for your prayers for all families in similar situations and
for your prayerful intentions of the healthcare community (medical
doctors and insurance companies alike) charged with the care of these
little ones.  May God continue to bless you for your love, generosity
and sharing of your spirit with others.  
 
Janina Arritola and family
http://gregoryarritola.tripod.com <http://gregoryarritola.tripod.com/>  


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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