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

What a heart rending situation you are in, I will continue to pray 
for Anthony. It is really hard to know what to ask for, especially if 
he seems to be struggling so much, but rest assured he is in my thoughts.

At 12:01 AM 23/06/2006, you wrote:
>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

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

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