The steroids are making her pretty darn irritable, and she has a bit of 'roid rage when she's upset. It's especially stressful since she still has various things attached to her that she could yank out while she's angry. We weren't able to get her down to bed in her crib last night, so they allowed us (after signing all the appropriate consent forms, of course) to trade the crib for a hospital bed so I could sleep with her. There was no other way Jason or I would have gotten any sleep last night.
Thank goodness they're going to start weaning her off the steroids soon! They're waiting until her labs are done this morning, and then they'll start reducing the dosage once she's clear.
The neurosurgery team came in to see us pretty early this morning and gave the order to remove her catheter. It's really quite a bulky thing and the only tube still tying her down all day (the rest are only hooked up from time-to-time or at night), so she'll be able to walk and move around a lot easier once it's out.
The other great thing about the catheter removal is that it's a sign of the doctor's deciding she has not developed Diabetes Insipidus (DI) - a condition caused by damage to the pituitary gland, where the hormone telling your kidneys how concentrated or dilute to make your urine isn't produced, causing you to pee a lot, all the time, regardless of how much you're drinking. It's easily controllable with meds, so it was never one of our biggest concerns, but now it's one less thing to worry about.
We will probably be meeting with ophthalmology today, if they can get Summer in, so we should have a better idea of where her vision is later today.
For those of you who aren't on facebook, I hope the link below works. I posted a video of Summer in one of her happy, playful times yesterday. The swelling has gone down even more since then.