The life of Emma and Gretta: Sunday afternoon

Things are still going well here- Emma Kate finally got her last IV out of her arm this morning! We hadn't needed it since leaving the PICU, it was there sort of as an emergency backup, and we're so glad to get it out of her arm! Now she's just down to the TP tube for feeding and giving medications, which is probably a lot more annoying to her than the IV was, actually... she can't stand that thing and claws at it a lot, I'm so paranoid she's going to pull it out again! Argh. They've changed her feeding routine now- starting last night they switched her to a higher calorie formula (I think it's actually Boost Kid's Essentials, like from the grocery store!), and they're cutting it off from 5am-noon in order to try to increase her appetite for breakfast and lunch. They're also adding some water several times a day since she's getting less total fed now. The new plan seems to have worked today- she woke up at about 7am (she actually slept for several consecutive hours overnight), and was very interested in eating! She had oatmeal, pureed cheesy eggs, and yogurt. Not a ton of it, but significantly more than she's eaten since being here! She's taking a little tiny bit of juice or water on a sponge to help wet her mouth, but we're still waiting to get approved for thickened liquids or plain liquids. They cut her rispirdol dose back last night and I think we're going to go ahead and stop giving that one- we haven't seen anything concerning since reducing it or removing the clonidine patch, so that's all good. She's got a lot of her personality coming through again finally, and is talking more each day. This morning she actually was very affectionate with our nursing assistant and had fun searching through all the various items in her scrubs pocket.

Emma Kate's ENT doctor got to see her this morning in full action- he was very pleased! He was relieved to hear she has been able to cough and some of the noise decreases after coughing. He feels like this is the best he has seen her so far, and she wasn't sleeping! If things continue to go well, they think we'll probably start talking about getting discharged sometime Wed-Fri this week.

Here are some pictures, and keep scrolling down to find a few videos of her activities!

More PT time