Monday, March 06, 2006

Nova definitely has an infection, we just don't know where it's coming from yet. They sent off cultures from every possible source - sputum, blood, urine, fecal, they even sent in the tip of the tube from his PICC line. He's running a fever of 102, fighting the vent (which has resulted in worse conditions with his oxygen levels than being off the vent and fighting to breathe) he's been spitting up, having diarrhea, is now on antibiotics, IV fluids and more sedatives (Ativan - listed side effects: nausea, vomiting, diarhea - just what he needs, something to add to the symptoms he's already having))to try to keep him from fighting the vent. If the sedatives don't work, they'll most likely restart the paralytics, but they're trying to avoid that, because that would be an even bigger step backwards than the one he's already taken today.

They're now suctioning everything out of his stomach (again) so that the vomit doesn't get aspirated into his lungs, and they aren't feeding him (again/still - he didn't really get fed for long.)

He's on an ativan drip, which was upped again at 8:30, his heart rate is up, his blood pressure is down, his sats are lower than we've seen them since the surgery. They changed out his vent tube this morning for a larger size, then at 4 o'clock they changed which type of vent they had him on again (when they re-intubated him, they had him on that other model, now he's on the one they changed him to the first time they switched them out.) Unfortunately, none of that particularly accomplished anything. You can watch him fighting it, he bears down and holds his breath. The extra effort in combination with the lowering of his oxygen level has created a situation where he's become "acidotic" which means basically his PH level is off balance so they're treating that too, and occasionally giving him morphine - in addition to the other meds he's on, which at this point, I can't even swear what those are, because they change from hour to hour it seems.

Where they re-did his PICC line in his groin looks horrible, it's red and swollen and bruised. The fluid draining from the left chest tube has increased significantly, he isn't peeing right again, so he's back on lasix and diuril.

It has been an exceptionally bad day - hard on him, nerve-wracking for us, and a pretty big slide in the wrong direction. The only good news is that Dr. Watts says there isn't a problem with his heart function. Everything else seems to be in question, but the heart looks good so far. I'll be glad when (in about 2 days) they know where the infection is, and can start treating it more directly than this general antibiotic treatment he's getting right now. And of course, there's still no information about the neurological stuff, considering the more important issues at hand.

I'm a mess, frankly. I don't know how people survive this experience - let alone the parents who have children who require multiple surgeries. I didn't want to come home tonight. I wish I could stay, I wish the hospital was closer at least. If anything happens, we're at the very least 35 minutes away, and that's hauling ass with no traffic.

This is not a roller coaster at all, it's a barrel roll followed by a stall, performed by an unlicensed pilot, in a dilapidated single engine plane - without seatbelts or parachutes.

posted by Erin @ 11:21 PM   4 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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