[tri-med] Re: Surgical Recovery Update for Anthony Arritola, T13 Survivor

Hi Nilda (and everyone else),

To answer your question as to why the phone just rings and rings and rings =
.... We were moved from the PICU to the cardiac step down unit, moved back =
and forth a few times based on our pre-post op status (3 separate surgeries=
) and as of last night at 4:00 am have moved back to PICU. (We are on Day 1=
9 of this hospitalization)

In addition to everything else, yesterday Anthony had 2 seizures - I wasn't=
 there to see these but after the neurologist and I interviewed the nurses =
yesterday. He is not sure they were epileptic in nature. I was there when h=
e had a apnea episode at 4:00 am this morning that was similar to the previ=
ous morning events but there are still several possibilities for open for t=
hese incidences:=20
1- event induced seizure - (i.e. pain ...)
2- epileptic seizure (brain activated) (Neurologist doesn=E2=80=99t think s=
o based on details)
3- apnea (Heart, lung or brain induced)
4- Brachiacardic - (although I believe this actually occurred after the eve=
nts started)
5- breath holding - (the little stinker that he is...)

Ah! Since I wasn't there for the first two incidences, I couldn't compare i=
t to past episodes but I am more comfortable with him in PICU now. He is on=
 CPAP on room air. His Pulmonary Hypertension is "officially" kicked in (as=
 our last cardiac office visit revealed it was in initial stages).=20

On a side note: We were denied (now 4 times) from home health care AGAIN bu=
t FINALLY I have renewed hope we "might" get approval - I have the VP of ho=
me health making sure it gets approved through medicaid (everything else ha=
s been denied even though we have deeming waiver). She says she wont stop a=
fter hearing our story until she gets approval!

Thank God. I feel like I said, "Tag, your it" and she is the next runner in=
 this advocacy game of life.=20

Thanks you all for all your support,

Janina Arritola
http://gregoryarritola.tripod.com=20

---- Pmickeymouse621@xxxxxxx wrote:=20
hello janina!! I have been trying to get a hold of you to the ICU but the=
=20
phone just rings and rings with no answer but I waws just calling to see ho=
w=20
ANTHONY was doing? I hope he is doing good as I have been praying for him a=
nd=20
your family. I have asked my precious son "Crispin" not to make another=20
mother go through what I had to as it will be harder for you since you real=
ly got=20
to bond with him. Once again you are in my prayers and I wish you the best.=
=20
NIlda and Lupe

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

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