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

Janina
I will continue to keep you in my prayers.

Home nursing care....please feel free to e-mail me about this. We when
through SO SO much to get it for Mitchell. We are now approved for 60
hours/week. We went through appeal after appeal. One thing I learned was
when appealing, make sure the doctors and you are talking specifically about
HIS needs--not yours. This is hard because when it comes down to it, it
really is for you too, but insurance sees that if it is for you-they don't
have to cover it. I had to explain in detail why it was in Mitchell's best
interest to have nursing care and IF he didn't--what could happen as a
result of it. Boy--we had to go through EVERY appeal process. If you go far
enough, eventually it'll get to the state level. This is where we won. It
took-2 or 3 appeals to get there and was VERY time consuming and mentally
and emotionally draining. (Just what you don't need) BUT-it is worth it! The
last appeal we did, we ended up having to pay $20 to get it looked at. The
insurance company hires an outside agency to look at the case and it also
goes through the insurance commisioner's office. What ever they decide is
binding for the insurance company--so if they overturn what insurance has
said-then they have to pay for it. Anyway, that is what happened with us.
Please let me know if I can help in any way. Even if it is just moral
support. It is a struggle dealing with this-especially when it always comes
at a time where you are already stressed. BUT-it was the best $20 we spent
and worth all of the letters and hard work. I hope that the social worker
from the hospital is helping you.
Let us know how it goes.

And again-many prayers for your family.
Katie 
Mom to Mitchell t13 mosaic


On 5/28/06 3:29 PM, "Janina Arritola" <JaninaArritola@xxxxxxxxxxxx> wrote:

> 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
> 


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

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