[tri-med] Re: Help needed & a longer than expected response to our little guy

Hi Laurie,

Yes, Shannon e-mailed me to let me know she is tying to adopt Chloe and
I wrote her back.  It does seem that Chloe (t9 mosaic) has almost the
identical growth issues and eating schedule (including amounts and
frequencies) as our Anthony (t13).  It's tough for me to see how our
path is almost the same and see where we are now.  I hope she calls me
today ... I really feel a need to listen to her.

Regarding your comments about sepsis - Little Anthony had cultures drawn
when he spiked the fever and antibiotics started immediately, like
Kayla.  But the cultures came back to confirm Gram Negative Sepsis.  We
were hoping this was just an exercise in caution but Gram Negative
Cultures are not a good sign.  

That said, he doesn't look like a child with Sepsis.  Several of his
doctors have said the same.  He actually looks like he is managing it
well which is getting the medical community all choked up.  He is
peaceful and calm and many of his docs, while examining him, spend 20+/-
minutes with him in silence - in awe - speechless.  I sit and ponder
what they are feeling but I try not to interrupt their 'moment'.  I can
see their emotions tugging them and they try to stay well composed.  HE
is working on them too.  I spoke to his infectious disease specialist
last night and we had a very interesting personal conversation (for an
hour and a half).  She confessed a personal moment with him and said I
probably thought she was crazy for thinking these things.  Little did
she know I have seen what she is talking about with Anthony's other
doctors.  I can see how Anthony is doing Gods work and is working on the
hearts of the medical community.  He gets them to an emotional place
where they cannot deny their life questions and are faced to cope with
there own personal feelings outside of medicine.  IT is truly a
spiritual experience.  

I'll let you guys know more as I learn more.  Right now the medical
literature on Gram Negative appears to be as dreary as the medical
literature on T13.  So I guess I'm not surprised.  HE looks great though
but he did have another respiratory arrest last night.  It lasted 4-5
minutes and he had one gasp at 2 minutes but the nurses were all
thinking he had passed then at 4.5 minutes, his respiratory rate went
from 0 to 12 and then up.  His heart rate had dropped to 48 during the
incident but went back up to 140 after about 4 minutes ... His alertness
went from unconscious to being awake and looking around.  I think he got
their attention just after their shift change! 

Am I numb to this now?  He is simply a miracle child surviving to pull
all the heart strings of his caregivers (me not being the least of
them).  He has the most beautiful smile and knows exactly when to flash
one.  Just as I see how apparent the situation can get and I feel I am
finally coping with his death - he does so much better medically and
turns around - then when I re-adjust to focus on getting well - he goes
into arrest again - then when he comes out, he smiles as if to say,
"it's OK mom, God is holding my hand" and am humbled by what this little
guy is enduring.  How can I be mad?  I'm not, I just want to be with him
while he goes through this.  This is where I just need TO BE.  TO BE A
HUMAN that is BEING a HUMAN BEING! 

OK Back to the purpose of this post:  I hope that all goes well with
Shannon and her invitation to bring bio mom to visit her home for a
smooth transition for adoption.  I pray all things go smoothly and once
again, if I can help, I am available.  Sorry for taking so much paper to
talk about little Anthony.  My heart pours out love and good things for
Shannon and her family taking on the responsibility of this littlest
Chloe.  Shannon proves blessings come to others through those willing to
step up and say 'yes'.  

With warmest Love,

Janina Arritola
http://gregoryarritola.tripod.com 

-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of TRIER9@xxxxxxx
Sent: Friday, June 30, 2006 10:40 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: Help needed

Hi Janina!
Hope little Anthony had a good night. How is his fever now?  When the
doctors 
suspected sepsis with Kayla, she was treated with  antibiotics before
they 
got the results back. Then found out she didn't have it.  Hope this is
the same 
with sweet Anthony!
 
Shannon (the nurse that is bringing baby home of her days off), is going
to  
email you. She is working 12 hr shifts right now....but is going to be 
bringing  the baby home again over the 4th weekend! She is going to
invite bio Mom 
over as  well. With all the info everyone has sent, I think she is more 
confident!! YES!!  This list is great for advise!
 
Kisses to Anthony, 
 
 
Take Care
Laurie
Mom to Brianna w/t9, Brandon, Marissa and Kayla  too



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

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