[tri-med] (t13) Hospitilization Update for Anthony Emmanuel Arritola

3:00 PM Sunday May 28, 2006
 
Today is Day 23 of this hospitalization.  One week ago, last Monday;
Anthony was being weaned from his central line for nutrition and
increasing the constant drip of fluids entering his stomach.  For the
next month following surgery, we will have to keep the stress off his
tummy and drip his feedings over a long period.  After a month (approx.
middle to end of June), as stressors decrease from the Nissan
Fundoplacation site, we can begin to bolus feed or allow him to eat to a
full tummy and wait for the next meal like normal eating patterns.
Until then, we need to keep things easy.  
 
At least that was the plan .
 
That said, this has been a very interesting and mentally exhausting
week, to say the very least!  Beginning last Monday, Anthony has
experienced several bouts where he has stopped breathing long enough to
have his oxygen saturation levels drop dramatically.  His central line
was not removed.  He has been bagged several times and almost had
cardiac compressions at one point.  He went back to Pediatric ICU after
a few of these incidences in the cardiac step down unit.  In the ICU, he
appears to be stabilized, but drops in absorption levels every once in a
while.  Just when things seem like they are doing great, he has another
incident.  Sometimes it comes with movement, or pain or irritability.
At times, his respiration gets high and his blood pressure increases,
other times, his respiration drops and so does his heart rate.  He turns
blue and sometimes blackish.  He sweats.  These incidences last for
about a minute +/- and when he is breathing back to normal, he sometimes
looks pinkish while other times white as ash.
 
When Anthony came out of this last surgery (on May 17th), his eyes
occasionally rolled back into his head.  It really freaked me out and I
asked the nurse if it was the anesthesia or medication.  This doesn't
happen all the time, but it has happened enough over the past week for
me to know it wasn't the anesthesia or medication.  Anthony goes through
periods of resting and awake as if an angel.  I have a whole spectrum of
emotions as we experience all these things.  I smile and I cry as I
ponder what my little Anthony is experiencing with these breathing
episodes happening recently.  
 
Regarding his incision, it is healing very slowly but nicely.  It could
take up two more months to fill in completely.  It is hard to think that
he will ready for surgery again at that time (to reconnect his
intestines) - but if his healing is going this slow, we have to ponder
our next steps carefully. To be honest, I'm not in any hurry to bring
him back to this moment.   
 
We are still trying to get approved for home healthcare to bring him
home as Anthony's needs are high-need for just the daily care. 
 
Additionally, Rick and I don't really have time for ourselves to take
care of some of our other medical needs either but we are trying as best
as possible to manage (all of) our children's needs above ours.  Please
pray for a miracle in the administrative red tape we are caught in
regarding appeal for approval for home nursing services for Anthony and
our family.     
 
We will try to keep our website updated to answer more questions...
Anthony is in for a long recovery and we appreciate your continued
prayers.
 
With Love,
 
Janina E. Arritola
http://gregoryarritola.tripod.com <http://gregoryarritola.tripod.com/>  
 

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

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