Ruby had a pretty good weekend/Monday. She did some corking trials and has improved with bottling- taking more from the bottle than through her tube most of the time. Her belly has been bothering her a bit, but she seems to be doing okay with it this morning.
They botched some blood work, several times... So that's been frustrating, because today she had her 4th poke for bloodwork that was due yesterday, her 2nd poke today. And both of them interrupted her sleep.
She's had moments where her oxygen saturation has been in the mid to high 80s, so they are looking at optimization for her meds or adding in one they removed previously.
They are going to continue corking trials, but we are still waiting on ENT to come and see her and explain what the plan is. We just found out today that we would need three trach changes under our belts in order to go home with the trach. We would have made sure we had both been here for the change last week if we had known. Please be praying that they will come see her and give us a better understanding of what their hopes/plans are. I'm going to try (again) to see if we can get them to round on her, since cardiology is completely useless when it comes to this part. We just want to be prepared either way, and can't be if we don't know what to expect. We tried corking again at 1:30 and she did okay, but only did an hour.
Tom and Lizzie went home yesterday, had a good time and it was a nice break from the hospital. But after a bit of a rough morning/afternoon the frustration is setting in again.
