Saturday evening

Emma Kate was a little out of sorts today, don't know if it is some pain due to the activities she did yesterday or not. She got two doses of morphine to try to help with any pain if that is the issue. She has been demanding to be in her wagon nearly every waking moment, even taking a nap in it at one point today! She loves to be pulled around in it, which to me seems to get boring after a while, seeing the same things over and over, but somehow it never gets old for her! She still seems to have discomfort in her throat, and naturally it's still painful when she coughs and sneezes. It's been hard to assess and deal with. We're also seeing an ongoing trend with her blood pressure being elevated, and we don't know if it's a pain thing or related to her surgery in some other way. She didn't pass much urine today and is looking a little bit puffy, so her fluid balance is off a bit, again, it's a bit strange that it's just hitting her today, after so many days without problems. She's still not got much in the way of appetite, and trying to get food in her is very stressful for us, we're trying not to make it stressful for her... which is really hard. She's not sleeping well for some reason, and again, we're not sure if it's pain or something else. It surely doesn't help that she gets interrupted throughout the night still for monitoring or medications. I'll be so glad when she's far enough out to be able to bring her to the Ronald McDonald House where it will be quiet all night... I just hope she's doing well enough at that point to be off of the darn TPN. No big plans for tomorrow as far as I know, everyone seems to be laying low for the weekend it seems.