Wednesday, March 22, 2006

Nova has a systemic yeast (that's what causes thrush) infection. It's in his blood. Any infection is a big deal - but yeast is difficult to beat. He's on Diflucan, but they're very concerned about how hard it is to get rid of. His blood pressure has been crazy all day, dropping and spiking, dropping and spiking - normal systolic pressure is between 80-85, during our visit at 6pm, it was 58 one time, 143 another.) His oxygen level at one point today was in the 30's (99-100 is normal) and they had to sedate, paralyze and bag him to get them back up because he had gotten so agitated that they couldn't calm him any other way. The nurse said he was completely blue. Now he's sedated and paralyzed all the time, but it's the only way they can keep his blood pressure and O2 sats on an even keel and at acceptable levels.

They need to run another peripheral IV and another PICC line, but don't really want to do the PICC line while he has the yeast infection because the yeast can/will colonize in it.

Needless to say, it was a hard day, a damn rough one, and we're back to holding our breath. He's taken so many steps backwards. We can't get him off the vent till they can do the cath, they can't do the cath while he's got the yeast infection, and they can't say how long the yeast infection is going to take to clear up. The longer he's on the ventilator, the harder it is to come off of it - the longer he's sedated and paralyzed the less breathing he does on his own. He's on more of all the blood pressure meds, more fentanyl... I won't say we're at square one, because the heart surgery s done, but I will say square 2 or 3, and at a standstill. The problem with that is that as long as we're at a standstill, he's at risk for more complications, more infections, more problems with his lungs...

Things are bad enough that they had to talk me out of staying tonight. The nurse said they didn't anticipate any emergencies coming up. I suppose that's good - but really all it means is that it's a chronic problem, not an acute one.

They told us originally that we should expect to be there for 3 - 6 weeks. We've been there for 4 1/2 now. There's no way we'll be home in a week and a half. They're still saying something like another month in CVRU and that's only if everything goes right from here on out.

posted by Erin @ 11:52 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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