Hi everyone.

Thanks for the responses I received thus far about this baby.  I can see
the importance for providing the details, so here they are.

This 18 mo. old was born with a congenital heart defect, and following an
open heart surgery at 3 months (Oct. 2000), and had a complication which
left him in the PICU for 3 months. He was very critical for almost all of
that time.

So when he was d/c'd, he had a nasty oral aversion, and was tube fed round
the clock.  Now, a year later, he is taking pumped breastmilk by cup, about
500cc of the 900cc he needs daily.  His oral aversion has lessened, but
will only tolerate crumbs of crackers and tastes of anything else.  His
other intake is breastmilk via tube.

To answer your questions about his health, he is doing extremely well, much
to the amazement of the doctors.  Of course, it's the breastmilk.  He is
developmentally behind, acting about a year, (because of the PICU stay, no
neurological problems), starting to climb, trying to walk, cannot crawl
yet, but manages to roll his way from room to room to find his mother.  He
is trying to speak, and all in all, is recovering quite well.

The tube he has, still an NG tube, is very thin and will not permit
anything other than bm to pass through.  Even protein powder has managed to
occlude it.  So again, no food.  At this point, the family is refusing the
placement of a PEG(G tube).

Yes, she is working with an OT.  The only thing I can see that may be an
issue, though she said her other kids were the same, was that his hair is
thin.  He was completly bald in the back of his head when he was d/c'd from
being in bed so long in the PICU (no, they couldn't pick him up, he was too
critical to move much), and it has filled in quite nicely, but it is thin.

I wondered about protein.  I know the calories are adequate because on 70-
75kcals/kilo/day, he is gaining an ounce to two a week.

So, what do you think?

Thanks for your input,

Trish

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