[tri-med] Status Update: Anthony Arritola Prayer Request

Several people want a quick update:  
 
Anthony has been in respiratory arrest several times this past week
especially.  He has been in respiratory arrest 2 times on Saturday, and
was near arrest a few times on Sunday and Monday where his breathing was
very shallow and slow and his heart rate very low.  He was very
irritable and didn't want to be held or moved.  This was really hard for
me as I really wanted to hold him but felt torn to do so with his
dropping status and irritability if I tried to comfort him.  Dad and I
were very close and he held our fingers - reached for our faces and gave
us several smiles and sighs.  He went into respiratory arrest again
twice on Tuesday and was near arrest three more times on Tuesday as
well.  
 
When he gets this way, it looks like he is not breathing, he is calm and
turns blue.  His heart almost slows down to a stop.  His Oxygen
absorption gets to zero.  Within 2-3 minutes, he gasps for air and
restores all vital functions to normal.  As our kids discuss their
feelings and desires about this situation, we all deal with stresses
differently.  My soon to be 11 year old son says this is "freaky" and he
has opted not to want to be with Anthony when he passes but he solemnly
wants to stay with Anthony and not see him suffer.  
 
Anthony had a video EEG, and sleep study in the past few days and later
today at 1:00 pm EST we will confirm if this is central apnea versus
cardio/pulmonary or something else.  We will keep you informed.  Thank
you for your continued prayers - we really do appreciate your love.  
 
The Gregory-Arritola Family
 
 
What is Central Apnea?  (Excerpts from Medline Plus, Medical
Encyclopedia) 
Central sleep apnea usually occurs in people who are seriously ill. For
example, it can occur in people with a variety of severe and
life-threatening lower brain stem lesions. Anthony does have
neurological issues from under brain development.  The brainstem
controls breathing and we were told at birth that this area was
underdevelped. As a result, any disease or injury affecting this area
may result in problems with normal breathing and heart function during
sleep or when awake.  In addition to these issues, it can cause sleep
deprivation as well.  There is a form of central sleep apnea that
commonly occurs in people with congestive heart failure.  If a
neurological condition is causing the apnea, it may also produce other
symptoms.  Complications may result from prolonged mechanical
ventilation and from the underlying disease causing the syndrome.
 
 
-----Original Message-----
Subject: [tri-med] Re: Anthony Arritola CODE BLUE Prayer Request
 
Its been a few days, anything more about Anthony?  Please tell us our
prayers are working.
 
Colleen, mom to Rowan Margaret, T18, 6/29/2000.
 
Bryan & Colleen Sibthorp
 
 
-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of Janina Arritola
 
Anthony continues to drop in heart rate and have respirations over 97
throughout the past few days.  But this morning, his respiration almost
stopped and was on the brink of Code Blue.  We watched him all day and
tonight shortly after 9:00 pm,  he stopped breathing and went full code
blue.  Within minutes he was breathing again and we are moving him back
to the ICU.  This cycle is getting shorter and shorter .. Please pray
for our family as we are dealing with End of Life issues.
 
Janina and Rick and family
Big Brother Lorenzo Arritola - 9 years old
Big Brother James-Christian Gregory - 9 years old
Big Brother Tray Gregory - soon to be 11 years old - four days before
Anthony turns one year old
 
 
-----Original Message-----
From: Janina Arritola [mailto:JaninaArritola@xxxxxxxxxxxx] 
Sent: Tuesday, June 13, 2006 11:04 PM
Subject: Prayer Request Update: Anthony Arritola (t13)
 
Quick Update:  
Anthony has once again returned to the Pediatric ICU
Day 39 of this Hospitalization
 
Congestive Heart Failure (CHF) Increases:
Anthony was diagnosed with CHF at birth and has miraculously survived
the odds thus far . astonishing docs.  But now, with all the additional
stresses to multiple body systems, little Anthony's heart is behaving
like a child that really does have heart failure.  The volume on his
heart and lungs is A LOT and causing him to breathe rapidly and very
heavily (an exhausting task at times).  And when they try to diurese
him, he dumps all his volume out his ostomy as if it was a third kidney
and he does not urinate using his blood filtering system (the kidneys).
It is very difficult to try to get his digestive system to absorb
nutrients while trying to get his heart and lungs to dump excess fluid.
His body is having a tough time with diuretics for his CHF and medicines
to aid with fluid retention.  
 
Little Anthony's heart is strong and although it beats great, the blood
goes no where and swirls around in his chambers . a little bit of
oxygenated blood with along with un-oxygenated blood goes back to his
body and his color is ashen grey.  Occasionally, he pinks up but with
out trend.  Anthony's broken heart is not a candidate for surgical
repair and it appears that his right and left atrium make one major
atrial cavity.  Additionally, his ventricles swap blood back and forth
in both directions with each heart beat making his beating ineffective.
When he was born, we were told they could probably manage his heart
conditions for many years on medications, but that didn't take into
account the difficulties he is now having with his nutritional
absorption.  
 
Feeding Difficulties Continue:  
Anthony's nutritional intake is relying more heavily upon the nutrition
he receives through his Broviac Central Line.  We have quite a few more
hypotheses to test before a schedule for getting him back on absorbing
formula might work.  (I.e. He keeps dumping all his fluids out of his
ostomy - to the point of dehydration)  That said, He continues to be on
TPN and Lipids via IV.   The good news is - for the first time, our
little peanut is getting more than "just skin" on his bones.  It's like
he is getting Jimmy Dean breakfast in a bag . all the good stuff that
makes you feel well fed and fattens you up!!!  He looks really good and
is gaining weight (and not too fast).  Hopefully we can increase his
volume safely from a continuous 18 hour drip to a 16 hour drip and
eventually back to a normal schedule . but this process of isolating
variables is S-L-O-W and once we get the variables balanced, the little
peanut inevitably grows again making all his demands higher (and off
balance again)!
 
Oxygen De-saturation Continues:  
Anthony is on continuous Oxygen with his pulmonary hypertension and the
results of his sleep study haven't been written yet, but I heard he
desaturated several times in the sleep lab leading them to make some
type of diagnosis for Apnea.  We hope its not central apnea (meaning
it's his central nervous system cutting on and off)
 
Additional Consults:  Anthony's ostomy output could be responding as if
he has an infection he is fighting off but we can't find it.  At least
we couldn't until . a routine follow up for his hearing test showed
fluid in his middle ear on a tempanagraph.  Anthony has always had very
narrow ear canals and doctors have never been able to see his ear drums
in any exam.  This past Spring he was treated for an ear infection
because the entire canal was red (doc still couldn't see the ear drum).
But we are beginning to think that he may have been experiencing ear
problems for quite some time now.  (Could this be all part of the
unexplained screaming attacks we had this past year?  
 
And we were told once that Trisomy 13 children just scream for no
reason!!! (Yeah, right!)  
We are awaiting a consult from an ENT and the audiologist.      
 
Little Anthony is so blessed to have your prayers and thankfully is
resting in God's decisive care.  Please continue to keep our family in
your daily prayers as we navigate these waters and can't help but ponder
the inevitable or if Anthony will again, as he has so many times before,
miraculously turn around to bless us with smiles at home.  
 
Anthony will be One Year Old on July 8th     (24 more days)
 
 
May the love of Christ fill your home and hearts with Blessings and
Peace,
 
 
Janina and Rick
http://gregoryarritola.tripod.com <http://gregoryarritola.tripod.com/>  
 
 
P.S. Please pray that God continue to give our family courage, strength
and perseverance.  
 
 
Once Again ~~~ The Gregory-Arritola Family Thanks You all for your
continued faith filled prayers.  
 
 

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

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