Hot weather Hot body

Brayden lives his life mostly in a temperature controlled world.  We know not to have him outside on hot sunny days or "play" in the snow for too long.  His body temperatures changes.  Too cold - his temp goes down.  Too hot - his temp goes up...when it goes up it tends to cause seizures.

Today was a hot day.  Here in Northern Virginia, we have barely stepped into spring weather, with days last week in the 50s and nights in the 30s.   Then today was in the upper 80s, maybe even 90 degrees.  Do you turn on the AC for the hot hours of the afternoon?  Especially since the evening cools off quickly and tomorrow will be in the 70s.

I decided no air conditioning...not a good choice.  Brayden's room gets the afternoon sun and his window is right above the metal roof of the front porch, a cooker. 

And Brayden was cooking.  His little body cannot tolerate the heat.  A temperature for him.  His face looked miserable.

Sometimes I do not realize the effect the surrounding temperature has on him.  It still surprises me that when he gets hot, he actually gets a temperature...it does not help that he does not sweat either, no way to cool himself off.

I cooled him off with cold water flushes into the feeding tube, stripped his clothes and cool wash clothes.