Lights and Tunnels

Eli had his cath lab procedure yesterday afternoon. We are happy to report that his recovery was quick and he is already home. The reason for the procedure was to measure blood pressure inside the heart and lungs, to know whether Eli’s lungs would be sufficient enough to make him eligible for the next heart surgery, the Glenn.

Here’s a little refresher course on his cardiac anatomy. Our hearts function in something like a figure-8 fashion (or 4-cycle engine). Blood flow is heart>lungs>heart>body. Eli’s left ventricle, which pumps to the body, is too small (hypoplastic left heart. Hypo= small, plastic= construction), so the solution is to step away from figure-8 and think more along the lines of a single lap through the body (or 2-cycle engine). Here’s a visual of our anatomy, and what his needs to be (click to enlarge).Hopefully, you can see that, for Eli, the heart pumps through the entire body, then the blood flows passively through the lungs and drains back into the heart. For this to work, the vascular system inside the lungs needs to be very open and free, otherwise the heart will not be able to push blood through the lungs after already making a trip through the entire body. Hence, the cath lab procedure: to test if the lungs are “free” enough, sufficient enough, for this to work.

With completely broken hearts of our own, we have learned that his lungs are not sufficient.

As things currently stand, Eli is not a candidate for the Glenn procedure. This leaves us with two options. One option is an entire heart/lung transplant. This would relocate our entire lives to Stanford, should a matching double-donor be found in time. Eli would be dependent on anti-rejection drugs, and be forced to live in a bubble (figuratively) the rest of his life. We believe it is extremely realistic to expect that to be a relatively short life, regardless. Tanya and I have already ruled this option out. The hardships it creates on each one of us, and the complete lack of a quality of life for Eli just makes this a path not worth traveling, in our eyes.

The second option is, for lack of better term, controversial. Eli would be started on a drug called Sildenafil to treat pulmonary arterial hypertension. That is, it would dilate the arteries in the lungs, allowing them to flow more freely. The debate comes in whether this is a long term solution, or not. The reality for us is that it’s the ONLY solution we might have.

Eli’s already been through the first stage heart surgery, which is intended as a hold-over until he’s stronger and ready for the second stage. Eli is tolerating his current cardiac status longer/better than most, so we have an unusually longer period of time before the Glenn is required. As we understand it, we will be able to use this time to try this drug for a while, and take another run at yesterday’s procedure a few weeks from now. Should conditions remain the same at that time, we will surrender to the path of compassionate care: taking him home and enjoying him while we have him.

So, now we are headed down a tunnel with only one door. We hope and pray, with the darkest outlook we’ve ever had, that the door will be open this next time, when we get there.

Plead/pray/beg God that our original prayer still holds worth: That Eli would show the doctors a miracle they couldn't explain.
Continue prayer that God is glorified through this journey.
Pray for the clarity and understanding for us. We believe this journey was orchestrated to change us, mature us... something. Since that doesn't seem to have happened, we don't understand what's God's doing. We trust Him completely, but can't believe the possibility this story is already coming to an end, yet.