Today was pretty uneventful as far as medical needs go. We were fever free all day, hooray! Lucy is on 22 hour continuous feeds until her NPO status gets lifted. She is tolerating her feeds for the most part. She does have moments where we know she is too full because she gets fussy, irritable, spits up, and generally doesn’t move all that much due to her belly being hard and full. Her doctors agree that she needs a break from the feeds every now and then to allow her body time to digest, hence 22 hour continuous feeds and not 24 hour continuous feeds. Their was some discussion from the GI team about putting Lucy on Erythromycin to help her with her motility, I’m not convinced that this is the way to go with her. I think that we need to give this new tube some time. By the end of the day today Lucy was behaving more like the Lucy we know and love. Her tone is improving and she is now sitting and pulling up to stand, oddly though she still has a head lag when you go to pick her up. I think that this is because she is not using her core muscles at all, they were weak to begin with but now she has a hole in her belly so forget about her using them now. Her IV called it quits on her this morning which caused her a lot of discomfort. When I asked her what hurts she held up her hand, I was so impressed that she did that! Thankfully we pulled it out and did not have to place a new one! We switched her to an oral antibiotic which we can push right into her PEG. Tomorrow we may have to place another IV in the morning because she needs to fast for at least four hours prior to the swallow study. Maybe we can figure something out, it seems torturous to have to place another IV, frankly she has no veins left to access.
Today we were able to get a six hour leave pass to get a break from this place. Drew and the kids came around lunch time. We had lunch in the cafeteria which the kids think is fantastic, actually it’s not too bad they have a sushi bar. After lunch we headed to the Please Touch Museum for the rest of the afternoon. We all had a blast doing whatever we wanted at the museum. We closed the place down as usual, we were literally the last family to leave. When we were leaving we bought ice cream for the ice cream truck that just so happened to be strategically parked right outside the museum at closing. The kids kept saying over and over what a great day they were having. That was the best father’s day gift Drew could have gotten.
Tomorrow’s plan is to do the swallow study at 2:30pm, I think she needs to have a repeat chest x-ray done as well, and then go home! Again, thanks for all your thoughts and prayers!