One Craptacular Day

Well, I'd been hoping that my next post would be more upbeat than the last. We've had a couple of really good weeks. Doing all sorts of exciting things. Our Chicago trip, Discovery World, a few more trips to the zoo, the Botanical Gardens, and CAMPING!!! All of these adventures with Ruby have been so much fun. But today has been a scary reminder of why Dan and I try so hard to make all of these fun days happen. But before I get into the details of the day enjoy some pretty pictures from said adventures :)

Playing in the daffodils

At Mauthe Lake with Granny

A total camping natural!

Chillin' at the Gardens

Now down to business:

Ruby was scheduled for an ECHO at 9:15 AM this morning, and after 12:30 or so we were finally done. Typical CHOW type procedure :( The ECHO itself went OK. Ruby woke up a bit too early, despite my warning them she has an incredibly high tolerance to sedatives, so they didn't get one final shot they had wanted. But other than that it went fine. And so we waited...and waited...and waited. FINALLY Ruby's cardiologist came back to discuss the results.

Now prior to scheduling this ECHO her card had assured us that he fully expected everything to be great. We probably wouldn't have to come back for another 6 months when she would need to have an MRI. But he implied that any intervention this soon after her surgery would be incredibly unlikely. I should have known better. Time and time again this man has shown his inability to be honest about Ruby's condition...and this was no exception. And so, like many times before, he told us the "bad news."

Ruby's right ventricle's pressure was 60% of the left ventricle. A normal person's right ventricle has around 25% of the left. Because of Ruby's anatomy we would never expect to see it so low, but less than 50% is considered safe. Anything above 75% (I believe this is the number he gave me) is incredibly dangerous and immediate action would be needed. So Ruby's number is too high, but warrants no immediate action...immediate as in this week. But within 2-4 months something needs to be done.

Now what, may you ask, is causing this? Well...it could be 1 of 3 things. It could be that her RV/PA conduit that was put in during her OHS to act as her Pulmonary Artery is narrowing. This would mean she needs another OHS, very soon no doubt, to replace it. This actually is not that bad of an option. She will need the surgery sooner or later, and maybe if she has it now she will stay healthier for longer.

Another possibility is that her MAPCAs are narrowing. (Those are the small spaghetti-like arteries that once came off of her Aorta but had been used in the Unifocalization to create the smaller pulmonary arteries that branch off of her conduit to her lungs) If they are narrowing in specific places the docs should be able to widen them using stinting and ballooning while they are giving her the catheritization that will be scheduled in that 2-4 month time frame. This is also not the worst case scenario, but it is a possibility that this would need to be redone again and again.

The final possible cause is what we all fear...that those MAPCAs are not growing. If they are not growing then nothing can be done. We either have to hope that they spontaneously grow (unlikely) or we wait for Ruby to die. I suppose there is the possibility of a heart and double-lung transplant if it comes to this but that surgery has just about a 0% success rate.

So as you can imagine...we've all had one shitty day. Now I know I'm getting ahead of myself. Ruby's doc seems to think that some intervention will be possible, but as I said before, he tends to exaggerate the positive. Therefore I don't really trust much of what he has to say. I'm incredibly disheartened by all of this. I was really hoping we could go a year without having to worry about her cardiac issues. I guess that was naive.