To get everyone back on the same page...

Everyone that follows this blog will know that our most recent topics have involved a scary little term: heart failure. Those two words squished together are alarming, because the heart isn't exactly an organ one can do without, and failure implies total malfunction. Together, they sound like impending doom.

BUT.

There's a lot more to the story than that. Failure doesn't mean total malfunction. It's a term for the process that occurs as a heart begins to function more poorly than it should. There are degrees of heart failure, and while it's always a serious situation (it can cause things like low saturations, more blueness, less energy, harder time eating, etc), it doesn't generally mean immediate drastic actions must be taken.

On a scale of 1 to 10, where 1 is hardly noticeable decreased function, and 10 is extreme, an 11 would be time for a transplant. Brandt is probably a 7. It definitely effects him; we're dealing with slightly lower than normal sats, mostly. But at this point, it's controlled with meds. Some are to give his actual heart some extra support, some are dilating the blood vessels around and between the heart and lungs to make the job a little easier.

Sometimes, these medications will actually give the heart a good enough break that it can heal itself a little, but even if that isn't the case, they can keep his heart working decently well for quite a while. Down the road, we may notice that it isn't working quite as effectively, at which point we can adjust doses, or try new medications. But the moral of the story is that he can live a mostly normal life for a few years before we have to start thinking about other options.

Transplant is probably the "other option". I've mentioned that a couple times, and I think this is where the confusion is coming from. To clarify, there's a very large difference between having a transplant on the table as an eventual option and actually being on the transplant list. The former is our situation. There are a lot of things that could change in the next couple years. Maybe his heart will heal up and we'll be able to do the Fontan (the original plan before the heart failure presented itself) when he's two or three years old. Maybe he'll remain stable on the medication for longer than anticipated and we won't have to think about another step until he's five or six or seven. And it could be that he ends up needing a transplant.

At that point, we would evaluate him with the heart failure/transplant team. They're currently in charge of Brandt's case, so they'll keep up with him in the following years. But the thing about transplants is that they're the absolute last resort. Ideally, a child will live with his own heart as long as is humanly possible, so they're going to wait until he's quite sick before they even put him on the transplant list. At that point, it could be a months long wait.

So. To sum up, Brandt is in heart failure, but he's NOT on the transplant list and won't be for (hopefully) a very long time. It will most likely be a very big deal when we get to that point. For now, we're maintaining, and hopefully we'll get to go home in the next while!