September 18, 2018

Morning all. Killian’s currently laying in my lap enjoying his mid morning snack (through a tube in his nose, but a snack none the less lol).
We’re waiting to find out when his next procedure is…he’ll have to be put under to have a scope done and an MRI. He sometimes has a hard time breathing, so the scope will tell us if he has an obstruction or not and the MRI is to check a little cyst they see near his liver. He likes to keep the nurses here on their toes. 😉.
Last night he had something called a harlequin event…I noticed that half his body looked pale/blue and the other half was a normal pink. He literally looked like Batman’s two face lol. The nurses called the Dr up because they had never seen it before. The Dr came and told us what it is. It’s not associated with his heart, isn’t anything to worry about, and is apparently extremely rare lol. He told us to take a picture if it happened again. Apparently this little boy likes to really stand out in the crowd. Lol.
I’m learning lots here. I’ve been able to do meds, tube cleanings, tube feedings, baths (he can’t go in an actual bath because of all the tubes and wires). The nurses here are absolutely amazing. Nurses rock. I don’t know how you all do so much.
All for now!

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