Second Opinion

I wrote Edeana this week in an email (instead of rewriting this all over again):

we got an opinion from Dr Michael Wall of Doernbecher
children's hospital. he seems to think isaac's a "classic" (as
classic as you can get with an extremely rare condition) case of
chronic interstitial pneumonitis of infancy. he thinks isaac was born
with this, and that they'd completely misdiagnosed him at emanuel. he
suspects isaac's immune system is just fine. he says we need a lung
biopsy to be sure, however (about the pneumonitis, i mean). he says
there are only a handful of cases in oregon that appear a year (like 4 or 5). and
we need to treat him now, as opposed to later, to avoid lung scarring.
once the lung scars, there's nothing to be done. except perhaps a
lung transplant. so to fix him now, once the biopsy is complete and
labwork comes back confirming, we treat isaac with a huge dose of
steroids over several weeks, maybe months depending on how he
responds. yeah, most likely there'll be some side effects from the
steroids such as extra hair growth. perhaps some overall growth
slowing down -- but i think i'd prefer this to him having bad lungs
when he's older. i'd rather be short and able to hike a mountain than
tall and forced to sit all the time. i think the prognosis is good...
i'm a little unclear. i sure hope it is! and why does isaac have
this? well, that, i'm afraid, is a question we'll probably never know
the answer to.

this diagnosis feels a little more correct to me. mostly because
isaac's been breathing so fast his whole life. it says to me that
there was something wrong with this lungs from the start. also, isaac
really started to breathe nicely there towards the end of our first
stay in the hospital. more so than i have ever seen him. dr. wall
thought that instead of isaac responding to the antibiotic which was
given to him to treat the pcp, he was responding to the steroids (which had been given to him in conjunction with the antibiotic). and
i remember once he was off of them steroids, his breathing really took
a turn for the worse and he was still on the antibiotic...

it's interesting, isn't it? we have an appointment with a surgeon who
would be performing the biopsy next week. i think if this is really
what's wrong with isaac i'm very interested in treating him very very
soon.

in the meanwhile he's holding steady. and breathing as fast as can
be. he's crawling now. he's an energetic little feller... someone as
energetic as he needs those lungs!!!