Monday Update

Things have been really great here the last few days. We are still tweaking a few diuretics, adjusting her tube feeds to maximize her nutrition, addressing the cannula sites and trying to help with a strange uncomfortable feeling Ry gets every now and then. But she has been doing really well. We are told that we may get to head upstairs one day this week, maybe even tomorrow. I have real mixed feelings about going up. For one, I LOVE our nurses down here. The entire staff has been great to us and I’ve gotten to know so many people so it will be weird to head upstairs where we’ll be starting over. I have no doubt that the ladies up there will be just as great (they always have been), but we’ve never gotten to know them as we have our ICU team. Mostly because once you’re upstairs, you don’t need as much attention. The nurses are there to make sure things are fine, but the floor is setup to encourage you to care for your child’s needs as much as possible. Often this is seen as a teaching period before you take a post-op or treated heart-child home with you. (Our stay this time will be different since we are just being cared for without the intention of sending us home.) They have already assembled a team of nurses that will care for Rylynn based on their experience and knowledge of the VAD. So I know we will be in great hands and we just consider ourselves lucky to meet a new set of friendly and kind nurses.

The other part of the move that I’m so super nervous about is Rylynn’s reaction. As some of you may recall several months back… Ry was super stable here after about a week in ICU and sent upstairs on a Sunday afternoon. After a several terrible hours with her in our new room upstairs, we had to head back down to ICU because her sats were so low and her vitals were off the charts. So at 10:30pm they brought us back down to ICU and by 11:30 she was sleeping comfortably and everything was back to normal. These moves are called therapeutic moves. Right now Rylynn does not respond well to any time spent outside of her room. Today, as we have done over the next several days, we went up to the eighth floor for a ride in the stroller and talked about and looked at all the familiar things. We are hoping this will help her coping with the shift. I’m still dreading it for that particular reason.

NOW the great part about moving upstairs, which I think I have stated before, but merits repeating, is a private bathroom and the ability to eat and drink in your room!! Enough. Said.

We were so happy to have Daddy stay ALL day today, but will be sad to see him leave this evening. We can’t wait till he comes again on Friday.

So I’ll sign off for now, but hope to have more good news the next time I post.