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From:
Lisa Cote [mailto:
ljcote@snet.net
]
Sent:
Thursday, October 10, 2002
7:57 AM
Subject:
more news on Ben
10-10-02
I know you
just got an update from me yesterday…Things can change so quickly these
days…in a matter of hours it seems…As I wrote you of Ben’s past two good
days, I had no inkling of the news I would hear a few hours later at the
hospital yesterday afternoon.
Jeffrey and I
met with another doctor yesterday who was reviewing the recent ultrasounds done
on Ben’s head, chest and abdomen. The
head X-Ray showed even more signs of severe extensive brain damage.
In fact the area affected is now front to back and on both sides and is
visually apparent. They showed
us an ultrasound of another baby Ben’s age and his looked nothing like it.
It was horrifying actually. The
pediatric neurologist said it was the worst case of pediatric brain damage
he’s seen is his 25 years of being there.
It is beginning to manifest in spastic movements of his arms and legs and
has even shown signs of seizures recently. Eventually,
pretty soon actually, they said his arms and legs will become less flexible and
his muscles will begin to be stiff and he wont be bending them as he is now.
But I didn’t see any of that yesterday…He looked just perfect to
me…
The doctor
then took us to a private room to talk with us.
He told us that Ben’s lungs are still very diseased and that he did not
respond to the steroid treatment that he had last week.
His stomach is still sick too and at a month old, he should be eating by
now but he’s not. Basically, he
told us that Ben’s “burden of treatment” is tremendous and will be for a
very long time. He may not even be
able to come home – EVER. He is
facing a very long hospital stay and then he may need to go to another hospital
for special needs children, etc…
Then the
doctor said that we will eventually need to weigh his “burden of treatment”
with his quality of life and we may need to make the decision to stop treatment
at some point. Imagine that?
I can’t imagine EVER giving up on my child…but I guess when that day
comes…I’ll know, like I did with Joshua – I’ll know when it’s time to
let go. But its such a foreign
thought to me now. I held him in my
arms yesterday and fell even more in love with him.
My beautiful son. He’s been
through so much already, it kills me to think he has such a difficult road ahead
of him. But Jeffrey and I are ready
to do whatever it takes to give him whatever time he has here with us.
And to make that time filled with love – Unconditional Love.
(Thanks Joan….)
Please keep
praying – I’m not sure what to tell you specifically to pray for anymore…I
guess just pray for whatever Ben needs and pray that Jeffrey and I will continue
to have the strength to be strong for him. I’m
sending some pictures that the nurses took yesterday as Jeffrey and I held him.
The quality isn’t that great because they’re polaroids…but
they’re very sweet..
Lisa
Cote
Click
HERE to see pictures...
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