Wednesday, November 19, 2008
Hours Friends, Hours Away
So it's Wednesday evening and we are still very much on the going home track. I won't really believe it until we are in the car with Simon in the back seat but we're closer than we've ever been. It's been a little rough going with Shimmy being a little more pukey than we've seen, a higher heart rate, he's lost weight since Friday, and we just heard that his BNP is in the 1600's up from 1129. So what are they thinking? I started the day feeling so hopeful and good and have been getting consistently more and more frightened as the day wore on. We regressed on the feeds two steps back and he still had projectile vomits throughout the day so we're going back to continuous feeds for a while to see how he does.
I know that vomiting and weight gain are things that we can manage at home but I won't pretend that the other things aren't freaking me out more than a little. I was talking to my sister today and I realized how tense I was thinking about going home. Then I realized I'm not tense, I'm frightened.
I don't get frightened really. I've been run over by a car, I've lost brain cells, I gave birth on the floor of my living room. Things might sometimes be hard to go through, I know hard. I've done it.
I'm scared right now. I'm scared that Simon is not on the upward trajectory that he seemed to be on even just a week ago after his serious bacterial infection. I don't feel frightened about going home even. We are so close to the hospital and being home where we can have some control over his environment can only be good for him.
I'm scared that he's not getting better. That's what I am terrified of. And, as much as I love all the messages of faith and dreams and visions, I am not clear today that that's the road we're on, not clear at all. If it were just one thing, the weight loss, the heart rate, the puking, the BNP, then I would be less inclined towards tonight's pessimism. But it's not. It's all of those things and they are of course all intertwined. I don't want it to be a trend. I want it to be just a bad week. We'll have good weeks and bad weeks. I want it to be different once we get home. I want him to feel it the same way that he seemed to respond to moving from the ICU room 1 to the Annex.
I do not want to come back here. I want all our new CHO friends to come to us but I do not want to come back her other than for outpatient visits and the yearly heart party.
AND, I am thrilled to be going home and have control over lights, sounds, when we go out, what we all get to eat and spending time with Roxie, Jaime, and Simon as a family.
Family. Home again. Unreal.
Hopefully tomorrow we post from home.