Saturday, April 01, 2006

I never know where to start with Nova's updates. Sometimes I feel overwhelmed myself with all the medical lingo - I hope you guys don't feel the same! So where do I start?
How about we start with the bald spot? Yup, a new one. The doctors want the central lines out as soon as possible, because foreign bodies tend to attract colonies of infection. So today, they removed the central line from his neck that was placed there a few days ago for the cath. Wouldn't you know, as soon as they did, the IV line in his foot went south, and they were left, again, with just the Broviac line in his chest. With all the meds he's on, one line just isn't enough, so they spent the day trying to get a new IV in. One of the spots they tried was the right side of his head. It was unsuccessful, as were several other spots - unfortunately, now he has a bald spot. I'm not really worried about it, hell, hair grows back. It's actually kind of funny. See when Scott was a kid, he was a street punk (sorry honey, but you know it's true!) and he was once whacked in the head with a brick, which scarred, and he has a tiny bald spot on the right side of his head. So of course we had to joke that now Nova and Daddy have matching bald spots.

Anyway, eventually they did get another IV in his arm, so they have enough spots for all of his meds again, for a while anyway.

He's off the Dopamine again, his vent is down to 30% oxygen (room air is 21%) and his sats are great and he hasn't desatted or had any periods of struggling to breathe. He's still pink and warm, and looking great. They're talking about getting the Broviac out as soon as possible, but I'm thinking that won't b until the yeast is cured. He's still on both antifungals for that, but no other antibiotics. They're feeding him again, but still only at 2mls an hour, just a trickle to make sure his digestive system is still functioning basically.

Aside from Nova's stuff, it was a tough night. Yesterday evening, a pediatric patient who received a heart transplant died. They weren't there long enough for us to even figure out if it was a boy or a girl, or how old they were. Then tonight we got there to find out that there was a new patient in CVRU that we never even saw that died after we got there, and that another patient who's got an artificial pump to keep him alive long enough to find a donor heart has had to be brought back nearly 100 times in the last 24 hours. As a matter of fact, we were up visiting Nova when they were "shocking" him at one point.

Then there's the baby in the bed next to Nova. We kind of check up on him as much as we can when we're up there - he's so perfect to look at, and the parents are obviously so frightened and concerned. Tonight I finally got a chance to talk to the mother for a while, and she told me that her son was only born with 1/2 a heart. I don't know anything about any such defect, no idea what it's actually called, but I cannot fathom the fight that little guy is going through, or how hard this is on his parents. I don't, to be completely honest here, even understand how he can survive something so massive. I think a lot about him, and them, and hope that the doctors and the powers that be can deliver the miracle they need.

I found out that what he has is HLHS, in case anyone else was as curious as I was... HLHS is a serious (very serious) heart condition that will require 3 surgeries, one he's had already, another at 5 - 6 months of age, and one when he's 3 years old. I've read some about it, but not a lot. There are links about it in the right sidebar there --->

So tonight, there were many tears in the waiting room. It was a difficult night emotionally. Every time someone's family member dies, or goes through a particularly difficult situation, it becomes personal. Every one of their tears is a reminder of how lucky we are, and how easily it could have been Nova that didn't make it. I just want to hug them all, to take away their pain... I'm all too familiar with what they're going through.

posted by Erin @ 1:38 AM   2 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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