Wednesday, December 14, 2005

Oy, sorry about the weird post last night, I was too damn tired at the time to think straight. We had gotten up at 4:30am so we could talk to the doctor by 6, before he started doing his catheterizations. Nova was the second one in, and was taken down at about 9 or so. We spent the morning with him, because he was off his feedings and miserable, so we kept him quiet for those few hours. The Cath is supposed to take a total of about an hour and a half to two hours, with prep and anesthesia, the actual procedure, and recovery time. So we figured he'd be done and awake by noon.

He didn't come back up until one o'clock - and was still knocked out, and on the ventilator (which was used as a routine part of the procedure.) At one thirty, the doctor came in to check on him and said he was surprised that he hadn't woken up yet.

Meanwhile, they're weaning him off the oxygen in the vent, in preparation for taking him off of it when he wakes up. 2 o'clock, 3 o'clock, 4 o'clock, he's still asleep, and we're a little freaked out. OK, maybe a lot freaked out, but the nurses don't seem overly concerned, his vitals are good, he's breathing above the vent - so we're just holding our breath, you know?

At 4:15 he starts to wake up, and starts to fight the ventilator, meaning he's flailing all over and trying to pull it out. The fact that he doesn't like it is a good thing, the fact that he's flailing is bad. He manages, in the process, to pull open the single stitch in his groin/femoral artery, and starts bleeding - A LOT, and I mean a LOT. They had to apply direct pressure for 25 minutes to stop the bleeding. When we get it stopped, he's covered, and laying in a puddle - in addition to the diaper that was soaked with blood. The nurse estimated it to be an ounce of blood - I think that was probably conservative - but even at an ounce, a newborn baby only has about a cup of blood total, so he'd lost a good percentage of his total volume. Afterwards, they tried to take him off the ventilator, but he was too weak and worn out from the fight and from the blood loss that he wouldn't breath on his own, so they couldn't take him off of it.

By now, we've been there for about 12 hours, we're tired and worried and freaked out and exhausted, and basically, emotional wrecks wrapped in a calm exterior, because I think babies hear and understand stuff, and we didn't want him to hear us freaking out.

In the meantime, we've told Mom and the kids that we'd probably be home by mid-afternoon, so I figure they're freaking out too, and there's no phone at our house, so I can't even call and let them know what's going on - which according to the nurses seems to be nothing, because they're seemingly unconcerned and act like all of this is totally normal.

We sit there until shift change - leave to go eat a little something and waste that hour, and come back, convinced he'll have woken up and been taken off the vent. No such luck, at 7:30 we get back and he's still asleep, still on the respirator (which is a huge intimidating machine with horrifying alarms! lol)

At 8:00, we're assured that he's fine, his vitals are still well within normal ranges, that he's just tired and will be just fine - colors good, he reacts to touch and sound, blah blah blah, go home and rest, you both look exhausted...

We get home about 9pm - call back at 10pm and guess what? He's awake, off the vent, and has eaten! If I'd have known all we had to do was leave to get him to rouse, I'd have left HOURS ago! Anyway, he's great, sleeping normally (as opposed to out-like-a-light due to anesthesia) and all is well.

Huh, he's stubborn and sneaky I guess, just like his brothers and sisters lol.

Anyway - the cath results showed pretty much what we expected. He has several peripheral arteries coming off his aorta that aren't "normal" but are what his body uses to transport oxygenated blood. These are what they wanted to see with the cath, and it shows that they're all very close together, which doesn't change the severity of the situation, but does simplify the surgery considerably, so that's good. It also shows that his body is dependent only on them for the oxygenated blood - and they're not going to close or change, so he's stable, with no worries about any major changes in his condition. In other words, for now, he's excellent - good O2 sat levels, which will remain as they are until surgery.

Now for the real news, which is both huge news, and no news at all...
They don't intend to do the surgery until after Christmas, and in light of the catheterization results, the doc that did the cath sees no reason for him to be in the hospital in the meantime. It isn't up to him whether he gets to come home in the meantime, but he approached the neonatologist, who agreed with him, and now we're waiting for an answer from the doc who will perform the surgery. If he says it's ok, Nova might just get to spend the Holiday at home!

That's exciting as hell, and almost as scary. I'm trying to imagine what taking him back for the surgery will be like after having him home for a couple of weeks. But I'm also not getting my hopes up that it will happen, because we really don't know yet. It depends on Dr. Watts, who is out of town this week, and is also the one who follows protocol most closely - he's very cautious and does things "by the book" so we'll see.

posted by Erin @ 4:17 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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