Sunday, September 7, 2014

Sleep but bad day

Reagan finally slept last night! Thank God! She seemed to be sleeping very peacefully, arms up over her head, and she even slept in a bit (even sleeping through a big poo/pee diaper change) we were expecting good things. Boy were we wrong! She woke up with a frown and furrowed brow, which quickly turned into a full on crying fit! She was very crunchy and bitey, so her nurse pinned her left hand down (the one she likes to put in her mouth). Well, that made her freak out! I freed her hand and she eventually calmed down a bit (it took forever really), but she was still super on edge. Her nurse gave her some clonidine which helped her to doze off. She slept most of the afternoon and then woke again pretty fussy. There were a few times that she almost flipped out, so her nurse gave her Lortab which helped her to relax enough to fall back to sleep. Something is definitely hurting her today. She seems very agitated, like something is really bothering her. When she's awake, she scowling. It's definitely been a bad day. The only saving grace is that she's slept through a lot of it (and she had 4 pee diapers, so no worries there). Hoping and praying she can continue to sleep tonight and wake up feeling much improved in the morning. All of this is definitely making me think maybe we should just move on and start the ketogenic diet. This formula agrees with her (she did go 4 weeks without any nausea episodes), but only at 20kcal per oz and 55mls/hr (1100mls total). Just not enough calories for her! I guess we'll see how the next couple of days go, but I'll definitely be touching base this week with the ketogenic diet group.

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