A nice, short, one-week stay. Little bit of a rough afternoon, just uncomfortable, but we vented her g-tube, and she seems more comfortable. She's still on some oxygen, and will be at a higher level for her respiratory cares for a while, but it's good to have her little corner occupied again!
Precious little girl - on Friday (I think), Matt came home with a story - she'd had a new nurse who didn't know her the previous night (which is kind of new because she's spent so much time there that most of the nurses know her!) and she was just having a hard time sleeping - really unsettled. One of the nurses that knows Mira was on the same shift with a different child, but popped her head in, and knew the easy answer: Mira's afraid to sleep in the dark, and wanted the light on. Sure enough, when her nurse turned on the lights, she settled right down and went to sleep.
It's hard to put into words how much that means to me to know that there is a whole crew of nurses who knows our daughter well enough to be able to share that kind of information that isn't in her medical file. Even when we're not there with her, there are people who know her and care about her, and are working to find out what she means when she's trying to communicate, even when all she's got is whimpering.
Longtime lurker here... First, that's so sweet of the nurses... Must make it just a fraction easier to leave her there knowing how well she's looked after...but second, I wonder about her needing the light... Does she maybe have some sight after all? You'd said before the drs guessed she was completely blind? Sorry, but curious.
ReplyDeleteGood question! Her optic nerve is completely withered - the eye doctor could see that during the internal exam (when they dilated her eyes), HOWEVER, she does have some light sensitivity - the best we can picture it is how, even if your eyes are closed, you can tell if someone comes into the room and turns on (or off) the light.
DeleteThat's what I was wondering, too! It's lovely that someone outside of Mira's inner circle realizes how important her communication is. It must make the world seem a bit warmer... and brighter for all of you. So glad your daughter and sister is home! 💓🙏🌌
ReplyDeleteYou should request that this info be in her chart or make a sign for room for future hospitalizations. Just in case you guys arent there and you get a nurse not familiar with her
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