Saturday, April 01, 2006

The guy 2 beds down coded while we were visiting at 6. I didn't want to see any of it so I went to the other side of the crib so my back was to him. They, of course, asked us to leave, but let me tell ya, it ain't a pretty thing. Then they couldn't find any of the family members, the wife wasn't even answering her cell phone. They managed to keep him going, or rather get him going again, and he was "ok" at 8, but I could have done without that experience tonight. And the guy with the artificial pump waiting for the transplant passed away sometime today.

I sure do like the good days better - and there are more good days than there are days like these last 2. I'm glad that most of our 40 day stay has been more positive. It creates a really difficult atmosphere in CVRU when they lose someone. I mean, I've talked plenty about what amazing people those nurses are, and how involved they get - so I'm sure it effects them on a certain personal level too.

But despite all that went on around him, Nova is doing pretty well still. The biggest news of the day is that they lost the IV in his arm. Back down to just the Broviac central line, which they really want to get rid of as soon as they can. Doesn't look like that's going to happen though. He's slightly swollen today, nothing major. The day nurse said he was awake and looking around quite a bit, but he was asleep while we were with him. And they decided against giving him the AmBisone simultaneously with the Versed and Morphine, which means that while the AmBisone is running (it takes 2 hours to transfuse) he's off the narcs completely. While he was off the narcs, he wasn't showing any withdrawal symptoms, and was still calm and perfectly fine. I won't delude myself into thinking he won't have withdrawals, we already know he'll probably have to be on Methadone to kick the addiction, but it was good to know he didn't have any problems today.

They did switch the blood thinner from Heparin to... Crap I forget the name of the new one... Anyway, the new one is safer for long term use. They want to get the blood clots taken care of as quickly as they can because they feel that each clot is at this point probably a tiny little yeast colony, and colonies are resistant to the antifungals. The yeast "hides" in the clots, or, that's how Dr. Timmons put it anyway. He's so sweet - and he's a fan of the Easy Button, which can only mean good things about him right?

There's still considerable drainage from his chest tubes, and until that's taken care of, they won't consider extubating him - so we'll be trying to be patient about that. I'm really concerned about feeding problems when we finally get him off the vent. I suppose I should worry more about the fluid, the yeast, the fact that there's still some bloody residual in his lungs from the lung perforation, and the other issues for now, and not so much about extubation, but it's something that does concern me.

Oh, they're upping his tube feeds 2 mls every 8 hours... Hopefully he'll tolerate that and do well with it. The more he can get nutritionally, the stronger he should get. Recovery time, according to one of the various doctors and nurses we spoke to, is in direct ratio with the level of nutrition the child receives. Makes sense on one hand, but then, he's been getting IV nutrition all along, so I'm not sure I completely understand. I'm just glad he's getting some food in his belly. He's barely eaten for nearly 6 weeks.

Anyway, overall, a good report.

posted by Erin @ 10:50 PM   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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