Day 67

We're still holding the course, which is always a good thing in here. Holden's going back and forth between being really happy (the happiest he's been in here, I think), and suffering from a little bit of withdrawl. We're still holding off on cutting any more from his meds, since we made such huge cuts earlier in the week, and he seems to need a little more time to adjust. He's back to not sleeping at night, which sucks, but shows us our baby is getting back to normal again. I have to remember that the lack of sleep is something we've prayed for!

He's been off of the oxygen support since yesterday evening, and he's still holding his own. His chest xray looks to be clearing up too, so hopefully he can keep up and keep the tube out of his nose. Everyone is still in the dark as far as finding out why the flash edema happened to begin with, but at this point the best we can do is watch him closely and pray that it doesn't happen again. Of course, I'll be a nervous wreck for a while, waiting for it to suddenly appear again... Finding out the cause would help to calm my nerves, but we can't always get what we want. That's one big lesson learned on this journey!

The only big change we're making today is moving his feeding tube into his stomach, which just happened. We still aren't sure that he's ready for this, but I'd rather they make the change here than up on the floor. Hopefully he'll tolerate feeds NG, and we won't have to take another field trip to Floroscopy to have it put back. It's so terrifying for him, and he's not nearly as sedated as he was before.

Speech therapy has been working with him to overcome his oral aversion, and this morning he ate two Cheerios all by himself. It seems like such a small thing for an eleven month old baby to feed himself two Cheerios, but for him it was a major step! Our hope is that he will continue moving forward, and take more of his nutrition by mouth... It's going to be a long road, but once he reaches his goal, we can say goodbye to the feeding tube, and get the last of the tubes out of his face.

They're talking about moving us back to the floor tomorrow, provided everything goes well with his feeds today. I'm going to love the relative peace and quiet on the floor (compared to the ICU), but I'll miss the level of care he gets here. Not only are the nurses and doctors here the best, but they know him so well after all of the time we've spent here. That makes a huge difference, as we found out last time we were on the floor and got demoted back to the ICU. Maybe this time they'll listen to us up there when we tell them something is wrong. :)