Tuesday, September 24, 2013

Day 15

I feel like so much has happened since the last time I wrote, I'm not even sure where to start... I guess I'll start with the move up to the 9th floor. This is the CPCU (Cardio Pulmonary Care Unit, we think) and is the step between CICU and HOME. She was moved because the CPCU can do everything for her that the CICU was doing at that point, which is a good thing. We still get our own, private room up on the 9th floor, which is nice, and we have started taking turns staying the night with her. The idea of this unit is to prepare families for going home, so they encourage us to be very hands-on and taking care of everything we can take care of outside of the medical part. In short, that means we comfort, change diapers, etc. and the nurses take care of her feeds and medicines. It is nice to be part of her care but being in the hospital is still exhausting and we are ready to be home. Of course, we want her to be ready to be home before we take her, though, so we are trying very hard to be patient. It isn't easy. ***** She is off of oxygen at the moment. She has kind of been on and off of it, so we are hoping it is real this time. We have been trying some oral feeds and, while she had some initial success with a lot of support, she has not had much interest since then. She doesn't even seem to like the taste of my breast milk, which is a little bit frustrating. Hopefully she just didn't feel like eating, which is why she didn't want it, but it sure looked like she didn't like it. She can have formula, if we feel like she needs it, but we are still trying the breast milk as much as possible. I'm pumping it for her and the "milk lab" is fortifying it before it goes into her NG tube. I guess we are going to have to learn how to do that. The doctors mentioned putting in a g-tube today, for the first time. We knew it was a possibility, but because her vocal cord is paralyzed, at least temporarily, as a result of the surgery she had, and she is not interested in learning how to eat at the moment, it seems like the best option. We are going to give it until the end of the week before we make a decision to give her enough time to practice her eating skills, but if she hasn't made much progress then we are going to have to do the g-tube. ***** Jason and I have started talking about what happens when we go home. We are pretty sure we are going to keep Levi out of daycare for several weeks to make sure he doesn't bring home those germs. We are going to have to set pretty strict limits on who is around Lexi, especially during flu season. We don't want to be the crazy, germiphobes, but we also know that Lexi getting sick means a whole different thing than Levi getting sick. We also tossed around the idea of Jason going home before me with Levi to try to get Levi into a routine again before Alexis gets there. We will see if that happens or not. ***** Thank you so much for the continued prayers. We thank God that she is doing so well, health-wise. She has had no heart issues and very few other issues. The main concern right now is feeding, and whether or not we are going to have to tube-feed her or we can take her home with just bottles. Only time will tell. Also that she does not have to go home on oxygen. Like I said, right now she isn't on any, but it might change again, as she has been off of oxygen twice before and had to go back on it. Thanks again and I will update when I can.

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