Little Man had been
doing well, then the last week of June brought really, really hot days....and
we tried to stay cool; but it wasn't enough. His appetite tanked, and it
became my full time job (not that it isn't already) to push more and more with
the bottles. I was worried that he wasn't even taking enough to stay
hydrated, much less for his nutritional needs. And I prayed for a break
in the heat and we kept the air on and kept him inside and tried to keep our
activities low key. And I wondered why he was responding so negatively
to the heat? He would sweat within 2 minutes of being outside, and 15minutes
would have him drenched in sweat!?!
We enjoyed his brothers 5th birthday party- a backyard BBQ- and he
was doing primarily well that day....it was the days that followed that he
started to decline. Was it the heat? Was it being too busy
all week preparing for the party and having church school and going, going?
Or, did he get a corn exposure?
Something isn't right because he clearly started going
downhill that week....maybe he didn't recover from the IV iron (the dextran
that is corn), maybe his body isn't recovering from the Alimentum
inflammation?, maybe it's something else in his diet, maybe it is the
ProViMin,...
I'm getting worried....one of the last times we spoke to our
GI she relayed that she was "getting frustrated" that we don't
understand why his gut doesn't function properly; and that she wanted to have
him admitted (somewhere, not necessarily here) that scares me. It scares me to have him
admitted here because they always set him back, it seems no one even tries to
understand his FPIES and the mechanisms that happen in his body. And getting
admitted someplace else? Where? Where could we travel, be away
from the boys, spend time away from my family, and work, and put him through
more and more tests and get actual real help and answers? Where??
Where would we go that we don't get the overwhelmed door shut in our face, travel how
far to say there is nothing else to do, nothing else to help him....
So, with all of this weighing heavily on my mind, and little man clearly not getting better- even with the break in the heat, his appetite was
not picking back up and his energy was really low. His sleep was getting
more out of whack- not waking in his sleep in pain, but unable to fall asleep
or sleep very long. Something is off, what is it?
No comments:
Post a Comment