So my last post was a big long monster of an update to explain as much as I possibly could. I will do my best to make this a practice in brevity and keep this simple and sweet.
How did his procedures go?
He did wonderfully during his procedures. He got a tracheotomy to allow him to keep his ventilator support more comfortably over a longer period of time. He got a broviac line, which is just a safer IV because they run it under the skin. Last, but not least, he got a G Tube (which is a tube that allows them to give him his feeds and medicines directly to his stomach).
Also while they were putting in the G Tube, the heart surgeons wanted to see if they could find his extra vein. They were successful in doing this, and put a small band on it to partially close it off. The idea behind this is that the band won't grow, but he will, so it will gradually close off his extra vein over time.
How has he been since all of this?
So there was some concern from some of the doctors that he hadn't really made forward progress before going and having these procedures, and without that forward progress were the procedures the best answer. In the end they felt they were, so they did them. Since the procedures though, he has made "tremendous forward progress".
He's already gotten off of several medications or switched to ones that can be given in doses instead of through an IV. He no longer has his one chest tube. He is entirely off of his paralytic, so he is moving and awake like a normal baby now. Today he is getting out his PA Line, and they think he'll be able to get his other line out fairly soon. They've even talked cautiously about him getting to go home in little over a month (though we've learned not to be too optimistic and jinxing ourselves).
So overall how are things?
Very good. We've made a lot of progress and couldn't be more pleased with how far we've come in the last week. We know we still have a long road ahead of us, but it's getting easier the more we get to play with him and the better/happier he is.
WARNING: I'm going to post two photos to show where he was, and where he is now. The first you may find unsettling, so by all means, turn back now if you think you might.
As always feel free to leave a comment or email me at firstname.lastname@example.org