Wednesday, July 30, 2014
Reagan had a HORRIBLE night last night. Super nauseous, I was afraid to leave her side...and I didn't until close to 1am. She seemed to be doing a little better, although not asleep, so I laid down. I got back up with her several more times...it was a LONG night. The nausea has definitely been better today, no actual throw ups and maybe not even any retches (she was on just pedialyte all night), but lots of other things that point to her still being nauseous (teeth grinding, sticking her tongue out, super spitty). This morning she had her follow-up with GI. Talk about good timing. Ryan was a handful (that's why I usually try to leave him with Grandpa for Reagan's appts but Grandpa is out of town)! We spoke to her doctor about everything (recent increase in nausea and "off" days) and the game plan right now is to increase her milk of magnesia (in an attempt to get her more "regular") and increase nortriptyline (from 5mls 3x/day to 6mls 3x/day). Because this medication has the potential to mess with her heart, we had to take her over to get a baseline EKG before increasing it (thankfully they were able to squeeze us in so we don't have to go back)! We also discussed potentially switching her formula again, but we're going to try this first (he does want another gastric emptying scan and abdominal ultrasound though). PRAYING this works! She was still very tense today, super stiff and difficult to maneuver, lots of chorea, and vocal/easily agitated (which made for an interesting car ride with her brother)! After we got home, we decided to try clonidine (we had given her oxycodone on the way to the doctors office and it didn't do a thing). The clonidine helped her doze off for the first time in a long time. Unfortunately it only lasted 30min or so, but when she woke up, she was much more calm. Legs were still and she wasn't even trying to jam her hand down her throat! She dozed off again for a bit and then was just very calm but awake (and spitty) for the rest of the night. I gave her clonidine again around 10:30pm and as of now, she's asleep! Prayers that my girl can get a good night's rest (even though she's still in her chair) and wake up tomorrow feeling SO much better (or keep sleeping)!