Sunday, March 29
Nothing new to report today. We didn't end up switching rooms, which is probably a good thing, because from what I hear we have the best room on the floor. Faith has had a really low-key weekend. I'm watching and waiting for the Omegaven to kick in, and for her to be awake more. She is still sleeping most of every day.
We're working on getting her 4 hours off the TPN every day to be during the daytime, so that when she is outpatient, we can go and do things during the day and only have her feeding pump/bag to take along. Although, the more I think about it, the more I think it might be easier to just keep her on the schedule she's on, since right now she's getting hooked up in the evening hours, when we'd definitely be back from whatever we might choose to do... We might end up unhooking her then when we were out, but the unhooking is the easy part, and I always carry a ziplock baggy with everything I'd need for that in the diaper bag, just in case. So, I think we will keep her "free time" from 3-7, or maybe even work on pushing it to 4-8, just to be sure we can go and do things, and not have to rush back to get her hooked back up to TPN.
From everything I've heard, the best way to do the Omegaven is over 12 hours at night, since it's a pain in the butt and has to stay upright on an IV pole. I hope they give us a pole for that, because the pole that came with our feeding stuff sucks! I'm assuming we'll get a new pump to replace the lipids pump we have, hopefully one with a pole clamp, because our TPN and lipids pumps don't have clamps, so I have to keep them in the bag in her bed with her.
I ventured out of the hospital for the first time today since Tuesday. A family from the Vineyard church here picked me up and gave me a ride with them to church. It was nice, and not that different from our church at home. And she invited me to join her at a moms' group, which I may take her up on. You can never have too many connections.
I think I may venture out again in a little while, this time to get a coffee and some non-hospital food. I paid attention and saw the Starbuck's across the street as we were coming back, and I know there's a big food court right around here somewhere, so I'll try to find that, too. Directions are so impossible here, I get so turned around. None of the streets are straight, and there aren't any mountains to tell me which direction I'm actually going! I think we'll be doing a lot of walking while we're here though, so I figure I might as well start now.
Oh, on a side note- it was rainy here this morning. Never have I seen so many people actually wearing rubber rain boots. (It really doesn't rain at home, and when it does, 90% of the time it's a fast-moving storm, so it will rain really hard and heavy for maybe 20 minutes, but then it stops. No one would have a use for rain boots at home.)
2 weeks ago