Wednesday, May 22, 2013
Reagan finally settled down and dozed off last night with the help of Clonidine. It didn't last long though, she woke at 2am and was fussing, so a dose of Lortab helped settle her back down and get her back to sleep. It was a restless sleep though and she wouldn't tolerate being laid down, so the night nurse just held her the rest of the night. When she woke this morning, she woke with the giggles! When I heard her, I knew she had turned a corner. She's feeling MUCH better today. She's still not 100%...her body continues to be very tense, she's very congested, and she's still got super cold clammy hands and feet...but she had two dirty diapers today and I think that has helped, so hopefully she'll be feeling even better tomorrow! I spoke with her GI doctor today and he wants us to bring her in on her next bad day, so that he can examine her and do an abdominal x-ray to see if she's "backed up" or has excess gas in her colon during these episodes. I definitely think it's related to the formula (and GI pain). I didn't notice much of a difference at 22.5kcal/oz, but once we moved up to 25kcal/oz, she's been a little more gaggy/burpy. And then now at 27.5kcal/oz, she's had the worst bad days we've seen in a very long time. I'm going to continue with the increase and Friday night switch her over to the full 30kcal/oz, but if we continue to see worsening, we'll be making some changes in the very near future. Please keep it in your prayers that we can figure out how to get her enough calories without overwhelming her GI system...there's got to be a way!!