Wednesday, April 29, 2015

Where the ceiling meets the wall

It's been two weeks since my last post.  Life has been "normal".  Both boys have had highs and lows and been in range.  Both have even gotten that elusive 100 BS check.  Doctor's appointments happened.  Finalized the 504 at school for Drago.  Visits and a birthday party with friends.  And a text from hubby at work that both were low at the same time that made my stomach lurch because I couldn't do anything.  Lot and lots of tears.  Some laughter and some anger.  "Normal" times.  But time is elusive.  It careens down a steep mountainside and sometimes all I can do is hold on.  It's a perception.  Time isn't real.  Time isn't a place.  It's not tangible and yet I was taken right back to a time where we perched on the cutting and steep edge of that mountain.

Yesterday I got to have a tour of our local children's hospital for work.  We are helping the Children's Miracle Network to help raise funds for medical tools for this local hospital.  Of course this hospital is extremely familiar to me. It is my home away from home.  Our endocrinologist for the boys is there.  Their dentist and now pediatrician are both their.  The lab where the boys have blood drawn is there.  Drago's neurologist for his migraine's is there.  Drago's psychologist is there and of course the ER where Sugar Bear was first misdiagnosed and then diagnosed is there, along with the PICU and floor where we lived that week of crises and life changing mountain slide.  I thought before the tour that the PICU  might be difficult for me to see or even the floor we were on after that where all the Type 1 education took place.  I haven't been back to either one of those since our experience.  But really what ended up taking my breath away and putting me right back in time was the Trauma room 1 in the Emergency Department.  Our guide pointed out these signs where the ceiling meets the wall.  About 13 of them each describing a different medical personnel and their responsibilities during trauma.  Trauma Room 1 was where Sugar Bear was diagnosed.  Those dozen or so people were all around my baby during diagnosis.  I had a "flashback" to that night.  I stood in the hall outside of the room listening to our guide but reliving the ER doctor telling me in that spot that my child has Type 1 and that he was in something called DKA and that he needed to be moved to the PICU immediately, that there was possibly some brain swelling.  Calling my husband to deliver the news.  Hearing his anguished cry.  Holding my baby's ice cold hand while doctor's and nurses surrounded him, working on him, saving him.  Time stood still.

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