Thursday, March 02, 2006

I forgot the camera today, so no pics.

We went up at noon today, Nova was more awake, really agitated, pissed off about the vent down his throat, trying to cry. It was much harder to leave him today, I just wanted to hold him and comfort him, make him feel better, calm his crying. Of course, that isn't an option, and all the whispering in his ear I did just didn't work. He looked very uncomfortable, but sometimes it's hard to tell whether he really is, or if it's my own emotional reaction. His heart rate and blood pressure looked great, and that's what they use to tell if he's hurting or whatever, so according to them, he was fine.

I disagreed, but who am I, really, when it comes down to it. They do what they do, they know what they know, and the doctor controls what goes on.

When we went up at 2 Dr. Watts was there, along with another of the doctors. Dr. Watts says, "Well, we're still watching his hands and foot movements, I'm sure the nurse has mentioned it to you." Um, no one said anything about his movements, what's up?
Apparently they're concerned about the way he moves his hands and feet, the way he pushes his tongue out against the tube. They are "not what we'd normally see, and we're watching them in case there's been neurological damage..." And then, basically, as if this were no big deal, he walks away to the next baby to check on her. By the time it sunk in, he was gone, and I was all but hysterical. What the hell do you mean, neurological damage?!

So they're going to wean him off the vent tomorrow (hopefully) and take away the sedatives, because these movements may be his reaction to being barely sedated and being limited in his ability to move around cuz he's so zooted, but he's pissed about the vent so he's trying to fight it... Know what I mean? But if the movements continue after he's off the drugs and the vent, they'll call in the neurologist.

They tell me they're "Sorry, we don't mean to scare you. We aren't concerned enough yet to call in the neurologist. It could be nothing, but we're watching it because it's not 'normal'."

So I'm terrified for him. It's just a whole other situation. If there's brain damage, it's just something entirely different now. Hearts can be fixed, brains can't. And the mentally challenged are devalued in society, picked on and made fun of. They never live "normal" lives. They never "fit in" and are always seen as outcasts that reside on the fringe of society, and no one can "fix" that. It isn't about HIS deficiency, it's about society's inability to accept and embrace them.

I don't know what to do with this: truth is, there isn't anything TO do with this. Nothing but wait to see if he's been brain damaged, and spend his life learning in stages what he will or won't be able to do. I don't think, at least for today, that I'm strong enough to see my son go through this, to watch him be shunned and teased and ignored and pointed at.

I'm trying not to over-react, trying to just wait the time it takes to find out if it's even an issue, but the truth is, I'm crushed by the possibility. They were supposed to fix him.

posted by Erin @ 8:00 PM   1 comments

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Donovan "Nova" LeClair

Monroe, North Carolina
Nova was our second child to be born with congenital heart defects. We lost our daughter at 12 days after open heart surgery in 2001. Nova was born 12/2/05, with Pulmonary Atresia with VSD. He lived 6 weeks after surgery, and passed away on April 6th, 2006. This blog is his story, and the on-going story of how our family is dealing with the loss of our beautiful boy.
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