Thursday, June 30, 2011


Ohhhh...I'm sooooo tired! And I'm sure my little one is even worse off due to having a disorder that predisposes her to fatigue and muscle weakness. But she can't tell me how she feels...all I know is that I'm exhausted! Four nights of sleeping on a sofa for 30min intervals...I'm beat! The laughs are back today and Reagan seems to be feeling better, that is, except for the extreme nausea! She's been super gaggy today, constantly trying to manage the overflow of spit in her mouth. She's thrown up and retched quite a few times, but not nonstop. It's definitely much worse than it was during her last bad cycle but not as bad as the cycles before that. She's making a lot more gaggy faces, than actually throwing up. I'm not a fan of either, really. Her hands and feet are still cold and clammy. We were able to finally take her arm restraints off today (she's not biting anymore), although we are still having to keep her left hand covered because she is sticking her fingers in her mouth and gagging herself! She's trouble! Tomorrow she's scheduled for the gastric emptying scan...basically to see if her stomach motility is the same or worse since starting her feeds through her j-tube only. The doctor requested a 6hr scan but there seems to be some controversy as to whether it's even worth doing anything longer than the typical 1.5hr scan. I guess we'll see tomorrow what the final decision was. I'm hoping the nausea is completely gone by then, otherwise we're going to have some serious issues trying to put something in through her g-tube (I'm guessing it will just come right back up if she's still having even the slightest bit of nausea). Please keep that in your prayers that everything works out and she's feeling much better by tomorrow (and preferably sleepy). I really hope she sleeps tonight because I am seriously running on fumes! Not to mention the fact that we have to leave before 7am tomorrow to head in to the hospital!

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