Thursday, March 09, 2006

Look at those beautiful eyes! He's awake again tonight - but grumpy. That's probably a good sign, it's the true Nova coming back, I mean he's spoiled rotten and is used to getting picked up at every whimper. Of course, he's been zooted for the biggest part of his 16 days in the hospital, and doesn't realize he hasn't been held in weeks - so he still thinks that if he whines, he should be picked up. Only, he doesn't get picked up, and proceeds to scream his fool head off - silently, thanks to the ventilator.

They fed him a little again last night, then he pooped a beautiful shade of maroon, so they stopped feeding him again. He basically hasn't eaten in over 2 weeks. He must be so hungry. Who can blame him for being pissed off and ill-tempered. I mean, he's on intravenous nutrition, but that doesn't do anything for the grumbly tummy.

We ran into Dr. Bensky in the halls tonight. He's Nova's regular pediatric cardiologist who was seeing him every week or so pre-surgery. I like him a lot. He was asking about Nova and said Dr. Stern has been keeping him sort of up-to-date on Nova and that...

>insert pregnant pause here<

apparently there is some concern about the size of the pulmonary arteries to one lung, and they're talking about doing another heart catheterization next week to see "what things look like in there." See, the arteries that they basically made by hand to go to the lungs have to be a certain size to maintain blood flow to the lungs and out to the body. If they're not big enough, not enough blood gets delivered to the lungs, and therefore, not enough oxygenated blood gets sent out to the extremities. His pressures were already expected to be uneven, but apparently, they're more uneven than they'd hoped for. We were told to begin with that he would almost definitely have to go in for balloon heart catheterizations as he got older and bigger - to stretch the arteries because they tend not to grow adequately on their own.

OK, here's the problem. We're never at the hospital at 7am-ish when Dr. Watts (the surgeon and 'guy in charge') makes his rounds, so we rarely get to talk to him, because he's usually in surgery when we ARE there. There are things that only the doctor can tell you - like the pneumonia thing. And since we haven't been able to talk directly to him, there are things we aren't being told. I understand the procedure, and even the reason for the procedure. Unfortunately, it leads to misunderstandings and confusion. I have NO CLUE whether this is something that he foresaw (is that even a word?!), or if it's in reference to the things he'd already discussed with us. I don't know if he's DEFINITELY having a heart cath next week, or if it's a consideration they're mulling over. I have no idea whether this is something serious, or something routine, a surprise, a complication, or nothing to worry about. Is this something that needs to be fixed NOW? Is the cath next week an exploratory type of thing, or is it a balloon cath?

I'm frustrated beyond words that I'm sitting here wondering about my son's condition. It really can't be helped - and most likely, Dr. Bensky will have his ass jacked for telling me anything at all about it before Dr. Watts has had a chance to discuss it with us. But, I'm calling Dr. Watts tomorrow, and the man IS GOING TO EXPLAIN SHIT TO ME. Luckily, Thurdays are Dr. Watts' "office day" -no surgeries, so I should be able to get a hold of him fairly easily. Otherwise, when I go up tomorrow evening after Scott gets home from work, I'll hunt the man down, I'll have nurses page him, I will find his house and invite myself dinner. Something's got to give. I can't sit here worrying, verging on freak-out mode, when I don't even know what any of this means. My rational side is trying desperately not to over react. The distraught mommy side is already homicidal and throwing shit around the hospital.

I've GOT to get some rest, get my head on straight, my emotions a little more under control.


posted by Erin @ 12:59 AM   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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