Tonight, before the sun set, we pulled her speaker out and played her favorite songs for a while. The nurse let her do it nice and loud, since no one is in the rooms on either side of us. And just for a little bit, she seemed to relax, enjoy the moment, and pretend like none of this was going on.
Since being here, she's been on gut rest. Meaning, no feeds. (Even if they tried, she would refuse them anyway, but they are doing it deliberately.) She's been getting IV fluids (D5 1/2 NS) instead. They're letting her eat by mouth, but she only took a couple bites yesterday. Today she ate most of a thing of tomato soup and 1/4 of a sandwich. They wanted to start Pedialyte for her feeds tonight (to slowly work her back up to formula), but she said no. Hopefully tomorrow. We figure she'll be able to handle it well, since it's more like water.
Remember how she got an IV last night? Oh, wait. No, that happened later. So, she got a new IV placed last night around 1am. Then this afternoon, she got it replaced. That is three IVs in three days. I told her she should set of goal of getting a new IV every day. She didn't seem to like the idea for some reason...
It's late. So, I'll leave it at that. But hopefully things will improve soon.
Ive been following your story for years... i cant imagine all that youve contunually kee going through. You and youre famiLy are truly an inspiration. you always have such a positive attitude despite the stree you endure. I admire you. Emma is such a STRONG GIRL... and such aN INSPIRATION. It breaks my heart i even cry sometimes with these post. And how your family has to travel so much...... I pray for her and your family as well..mom your doing great.. there are no words i can say..... but stay positve as you always do. Im sorry but i had to let you know you are a true hero.... as is she.....
Could she get a picc line for iv hydration at home and then she has it when she needs it for hospital.