Caleigh's pain has improved a lot since we stopped feeds last night. She transitioned from being on IV fluids overnight to full pedialyte through her g-button today. We're hoping to take things slower this time.
The weekend plan...
24 hours of pedialyte. Today.
24 hours of half strength formula. Saturday.
24 hours of full strength formula. Sunday.
That would bring us to Monday morning. At that point we will see how she is doing. She will be on continuous feeds 24 hours a day and hopefully, once home, we'll be able to slowly get back to her 18 hour a day schedule.
We are fortunate that Caleigh has had some nutrition on and off over the past week. We are nearing the end of the wait and see period though. Her guts need to do their thing or we're looking at a nutrition alternative that we haven't seen since 2010. I'm not even going to speak of it here.
We were able to stay in family housing on Friday, after Eric did laundry, packed up and stored our luggage in their basement that morning. We are supposed to be out again on Sunday morning, but we'll see if something opens up. We can both stay in the hospital room if need be. We've still been taking turns sleeping at the house each night and it's good to leave the hospital noises and room behind.
Tomorrow will be a week in the hospital and we're all feeling it in one way or another especially because we can't leave the room with Caleigh. She's cried, screamed and complained the majority of today. Not in pain, but in anger. In fact, she told me she was angry on her iPad. I fear that our progress with behaviors over the past six months has taken a big step back. Draining, but it is what it is. Hospitals are scary, intrusive and not the environment to raise a child. It's something we'll have to support, day to day, until we're home.
A lot is riding on this weekend and the plans we have for progressing feeds. We are hoping with all of our tired hearts that this goes well.