September 26, 2018

Happy Wednesday! We’ve had an eventful few days here in our Sick Kids Suite. There was a scare Monday night with our dude. Let me tell you, getting a 2am phone call from the hospital where your child is at is something I wish on no one. That was terrifying. Thankfully it was just one of the nurses filling me in on the concern. We ended up having a night time X-ray, and he wasn’t allowed to eat (that’s called NPO), I’m now the acronym queen.

There was a concern Killian had gotten NEC, or Necrotizing Enterocolitis. Which sounds way too much like the Necronomicon if anyone knows what that is lol. It’s about as scary too. It’s a really bad bowel infection that can kill the bowel very quickly and has a 25% mortality rate. After more tests and ultrasounds, and after 17 hours of no food, he was cleared. He does NOT have it. So big huge happy dance for that.

Overnight he slowly weaned back onto his feeds, which he’s very happy about. He’s not very happy when he’s hungry. Hangry definitely runs in the family.

Today has been uneventful medically, which I love. But we were able to go to the floors circle time, which he slept through. He had an early morning visitor, my MILs best friend (and ironically my high school principal, what are the odds). He’s been up charming all the nurses. And we got to practice lots of baby massage with the occupational therapist (the long term drug that he’s on to keep his valve open can cause lots of stiffness in the joints and swelling of the bones, so the stretches and movements are super helpful).

It’s been a good Wednesday! Here’s my selfie as the nurses did a change on his IV line.

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