My heart is so heavy today. Last night Jason, Lily, Ben and I were in the kitchen hanging out, singing Christmas songs and just being goofy when all of a sudden Ben went into respiratory distress. One moment he was fine and the next he was turning blue. We quickly got him back into his room and went into life saving mode. We coughed and suctioned, threw on the O2 and his sats just kept dropping. Finally, when he reached the low 60s we did an emergency trach change. Typically, we find a plug and know exactly what caused the distress. This time his trach was as clean as a whistle. I have no idea what caused him to do this. Meanwhile, during all the craziness Lily is on the couch melting down. She went into hysterics. She has never done this before. I think she is beginning to realize the reality of Bens disease:( When everything calmed down, she just laid in bed with him with her arm around him and cried. It was pitiful. Please say a prayer for my babies.
Posted on: Fri, 19 Dec 2014 11:53:30 +0000
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