Crazy Heart Mama

This guy managed to lie still for three full hours. We originally thought he was going to do the MRI sedated, but he wanted to try it without sedation. So he spent an hour in the MRI machine this morning, then took a break and then spent another two hours in the MRI machine this afternoon.

I’m not gonna lie, I could not have done it. When he was trying to decide whether to go with sedation or not, asking the anesthesiologist tons of questions about what kind of sedation, he finally asked, “Can I just see where I’ll be?”

When they showed him the room with the MRI, he asked, “So I’m going to go in that tube?”

And that’s when I would have been like, “Ah, hell, no. I’m going to need to be knocked out.”

The tech said, “Yeah, that’s where you’ll have to be.”

Colman said, “Oh, that tube makes it better.”

All of us said at the exact same time, “Really?” I mean, I’m going out on a limb here, but the way we all asked “Really?” in shocked voices, in unison, I’m pretty sure they’d never had anyone feel that way about having an MRI before.

And now I feel confident that Colman must have been a wolf or some sort of den animal in his previous life. It’s the only explanation that makes any sort of sense.

We won’t have the results of the Cardiac MRI for 5-7 days. But I hope we may have some sort of a general idea during rounds tomorrow morning.

Today has been frustrating for both of us. Colman is feeling a little bit better, but the fluid is not coming off as fast as we would like with the IV Lasix. In the past, it’s worked quickly to get the fluid off and get him back to baseline. It’s taking a little longer this time. I thought we might go home tomorrow, but I feel we really need to be back to baseline before we go back to oral Lasix.

Tomorrow is a six-minute walk test, pulmonary function testing and an ultrasound of his kidneys to check for secondary kidney disease. Colman’s liver numbers are all high, but the liver team felt that he wasn’t having Fontan associated liver disease, also known as FALD, and he had a liver ultrasound with elastography in February that was normal. So he doesn’t have to do a liver ultrasound again.

It’s all coming down to the tricuspid valve leak that has now been upgraded from moderate to severe. More than half the blood that’s supposed to be pushed out to his organs is backflowing through that valve, so hopefully the Cardiac MRI can shed some light on what’s happening and what his actual function is. Some people have asked about Colman’s ejection fraction, which is a measurement used to see how a heart is functioning, but it is impossible to calculate ejection fraction without a left ventricle, so the cardiologists can really only make guesstimates on function.

The heart failure team usually meets on Fridays to discuss patients and go over their cases, but since this Friday is New Year’s, it will be the following Friday. And that’s fine. They should have all the information by then so we can figure out next steps, which could be something as simple as increasing his blood pressure medicine to open heart surgery to replace the tricuspid valve to listing him for a heart transplant.

So specific goals for tomorrow are to finish up the rest of his tests and get him back to baseline. Here’s hoping that he’s closer to baseline weight in the morning. I feel like we’re in the best place we can be to get him figured out. And Colman does, too.

Thank you all so much for checking on our boy. 🙂