Saturday, March 04, 2006

Well, still off the vent tonight, thanks to the patience and hard work (and steadfast resolve) of our nurses. Shawn was his nurse today, and we've never had him before. He is just amazing. He worked his ass off through the hardest part of Nova's "withdrawal" from respiratory support. The doc told him he must have worked hard, because he had fully expected to come in and have to put Nova back on the vent. Actually, Shawn plead our case and basically begged to have the chance to do what it took to keep him off. It would have made Shawn's day SO much simpler to just let them intubate him, but no, he wanted to give Nova the chance to be off and stay off, and was willing to go through hell and high water to do it. And all on his first shift with Nova. That's the kind of people we deal with every day. Nova needed a LOT of extra help and special considerations to stay off - he's really having to learn to use those muscles again. They have him on oxygen and run constant blood tests to ensure that he's doing well, but he's still really working. And one of the things they do is minimal stimulation because the crying and getting out of breath makes it harder on him - so we weren't allowed to touch him or talk to him much all day, we just had to stand back and look. But that's OK, hard, but OK. We do whatever he needs us to do to help him, and if leaving him alone is what it takes, so be it.

On the neurological front: He doesn't seem to be doing the motions with his hands. I finally saw what they were talking about yesterday - the rhythmic rolling wrist motion. I had seen that he did it, it just didn't strike me as a concern at the time, but he hasn't been doing it today, and the tongue thing stopped too. With Shawn he was focusing and tracking, which he HASN"T been doing at all so far, and that's a good sign, but the night nurse hadn't seen him focus or track. I just don't know what to think. The hard part is that now I watch for the things they've mentioned, and any other sign that would make for a definite yes or no - then I second guess evrything I see or don't see.

He keep shis mouth open now, but that might be the oxygen being at such a high pressure, or the fact that he's tired from working so hard to breathe. He's lethargic and moving very little, but again, maybe he's just too tired from working so hard. He sleeps with one eye open just a slit, which he has always done - but tonight, in that slit, I didn't see his eye, just the white of it: is that because his eyes were turned to the side or because they were rolled up in his head?

And the thing is, to say anything definitive, they need him to be more awake and aware, more able to breathe by himself with out the extra support, they need him to be less agitated and able to take the stimulation.

The earliest they can get a neurologist in there is Monday, unless there's something that makes them believe there is definitely evidence of brain damage that would constitute an emergency type situation.

So we wait. We wonder and worry, We dread. And we try to pretend that everything is fine. But deep inside there is a voice, and it's saying very firmly, "Everything is not alright."

I wish it would shut the fuck up and leave me alone, because I need everything to be ok. I need, for once, for my gut to be wrong.


posted by Erin @ 3:00 AM   0 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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