Cath results

Doc guest post

Rowan had his cardiac catheterization today, where they thread a wire through a vein/artery in the leg and go up to the heart, take pictures with dye and measure pressures in the chambers and nearby blood vessels.

The last few days, his saturation levels (how much oxygen in his blood) have been trending down and the hope was that this was because the plastic tube that takes blood to his lungs was narrowing (a common problem that would be an easy fix). Of course, this tube was perfectly fine and had no issues.

What they did find: his heart function is good. However, the pressure in the arteries to his lungs is too high. It may or may not be too high for the second stage of his repair, and it may or may not respond to medicine that lowers the pressures. They tried giving him a medicine during the cath that would lower the pressures and they haven't "crunched the numbers" to see the response. There was one vein (vessel from lung back to heart) in which the pressure was high as well. This could be an incidental nothing that is not a big deal at all. Or it could be the start of a progressive problem in which the pressure in the other veins gets higher, too.

What this means: good question...there is a conference in the morning with the heart surgeons, cardiologists, pulmonologists, and some other -ists at which they will sit around, talk about him, look at his numbers, his history, and each other and determine what the next step is. If his pressures remain high, the next repair is not really doable. It relies on those pressures being low enough for the blood to flow that direction. It sounds like the main idea is that we will give him the medicines for lowering the arterial pressures to see if that helps or if the pressures go down on their own over time.

Best case: he gets a new med and his lung arteries open up and he gets better and is able to get the next stage of his repair. He eventually gets to come off the extra med and sails smoothly through life without a care in the world.

Worst case(s): The pressure in his lungs (arteries) is too high for repair and stays too high even with the medication. Or the pressure in his lung veins becomes a global problem instead of just one vein. Either one means...well, um...transplant. And that is a whole different ball game. We think of transplant as being an instant fix to everything, when in reality it presents its own set of problems - not all short term. Problems which we will worry about if that becomes our only option.

Moving forward:  We won't know anything for sure until...well, not tomorrow; but we might have a better idea of where we stand. Looks like we will never get a for sure from this one. So we are in the ICU again for right now. He is intubated and the plan is to turn his settings down overnight and see if he can get the tube out in the morning. This is very reasonable. He hates the tube and will get rid of it as soon as he can.

From Elle:

Those of you offering to help, here is what I can tell you - all we can do right now is wait. It is hard, and I promise we will call on you for your help whenever we can use it, but there is nothing we can do right now. I have a place to stay here and Matt is going back to work.  This is not something we expect to be a short fix and we want for one of us to be with Evelyn more than every few weeks.

I keep holding to this image in my head of Rowan and Evelyn getting up in the morning and arguing over who get's their height measured first on the growth chart we're going to put by the door.  I picture her bossing him around and him ignoring her.  I try to think of normal stuff in the future and hold on to the hope that one day those thoughts will be real.