Wow. I know someone who has completed neglected their blog. Like a dried and withered chia pet I have left my blog to fend for itself against the cold vastness of the interweb. I used to be a stat ho, checking to see who was reading. I don't remember the last time I've looked at Sitemeter. My lack in blogging lately has stemmed from the fact that I felt like nothing was going on that was of much interest. It's only been lately that some interesting things have been going on, so here I am.
A couple weeks ago we sent a heartfelt email to Elliot's cardiologist at CHOP in Philadelphia. We were concerned because Elliot is still on oxygen 24/7 and is slowly needing more to keep his saturations up. We've read several stories of kids that were on oxygen before going in for their third HLHS surgery, the Fontan, and their lungs not being able to handle the additional bloodflow provided by the surgery. The docs then have to go back in, undo the surgery and put them on the heart transplant list. We didn't want that to be the case with Elliot. We want him to ready for his third surgery so that everything goes by the book and we can move past it.
We got a response back from the cardiologist and we were surprised to hear that he wasn't aware that Elliot was still on oxygen. This struck us as a little crazy since our local cardiologist had just written a letter asking what could be done for Elliot's lungs. It seems odd that he would never mention that he was still on oxygen. So Dr. Rychik, our CHOP cardiologist, suggested we come up to Philly for a heart/lung cath to see exactly what was going on. The plans were made and we made the two day trek up to Philly about a week and a half ago.
We were only there for a short time, arriving on Friday for check-in and pre-op and leaving on Tuesday after he was discharged from the cath. With the heart/lung cath, they were looking for a few things in particular:
- What is the blood pressure in the lungs? This was a major concern for us. The entire HLHS repair requires low blood pressure in the lungs. If the pressure is high, the third surgery wouldn't go well. All along they thought Elliot's need for oxygen was due to high pressures in the lungs.
- Is there narrowing of the pulmonary artery?
- Are there any collateral veins that have formed back to the heart, allowing for a "path of least resistance" for unoxidized blood?
- Does he have a lung disorder allowing for unoxidized blood to mix with oxidized blood in the lungs?
The cath showed that his lung pressures were actually low, which is fantastic news. It means he's a good candidate for his third surgery coming up next year. It also showed there was a slight narrowing of the pulmonary artery, but not enough to affect anything right now. There were no collateral veins. Both the narrowing of the artery and the collateral veins are things that could have been fixed with the cath, allowing Elliot to pretty much come off of oxygen immediately. That's what we would have liked.
What they found in the lungs is that he's got some Arteriovenous Malformation. This is a slight malformation where the arteries join the veins to transfer oxygen in the lungs. Basically it allows for unoxidized blood to mix with the oxidized and get pumped to the body, thereby reducing his O2 sats. The good news is that they have seen where the third surgery corrects and reverses this phenomenon, however, they can't be sure because they don't know a lot about it. This kid's a walking rarity...well, almost walking.
So we're settled back home now and not a whole lot's changed from before we went up there. We're still on oxygen, but it looks like they're going to move Elliot's third surgery to sometime in January or February, earlier than originally thought. He's still on his feeding tube, which means we have to follow him around with the feeding bag for the hour or so that it takes to run in.
He is growing like a weed though and is developing very well. He's very close to walking and Sunette's got him doing sign language and recognizing words. He starts Algebra next week.
Sorry for the long post. I'll keep you posted on Elliot. There are a few other things that have happened, but I'm saving those for another post. Got to keep something in the hopper.
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