Oxygen, Lasix, Enalapril, and Digoxin, oh my!

We got some really good info when the team rounded today. Dr Swanson spoke with Dr Kaine, and they formulated a tentative plan. 

It seems we are dealing with a host of issues with the little guys heart:

*severe pulmonary valve regurgitation

*congestive heart failure

*right ventricle dysfunction

*Left ventricle dysfunction

*pulmonary edema 

*pulmonary hypertension

The valve leakage is of little concern, as Dr Swanson said conduit valves leak. Most kids tolerate the leakage with little problems. The concern is Ethan is not tolerating the pulmonary insufficiency at all. 

So she believes the issue lies with his right ventricle more so than the valve.  

Bottom line; he needs a new valve.   The right ventricle is terrible and the pressures across his pulmonary artery are too high. 

The "plan" so far is:

*home on oxygen-the right ventricle benefits highly from oxygen-and his sats are not to get any lower than 92. We are to start at 1/2 liter of O's and can go up to 2 liters if needed to keep him at 92. 

*Lasix- because his lungs still sound wet. And we need to keep the fluid down so his heart doesn't have to work so hard. 

*Digoxin-to improve the pumping function of the right ventricle 

*Enalapril- to improve the left ventricle contraction, and also help the pulmonary hypertension. 

*and last but not least-home with an oxygen sat/heart rate monitor to make sure his sats are above 92-only spot checks or if we notice an increased work of breathing. 

And the heart rate monitor because the Dig and Enalapril will lower his blood pressure and heart rate, and we already know he tends to have low heart rates. 

* discharge Wednesday with all our fun new toys and follow up with Dr Kaine in two weeks for an echo to see how well his new regimen is working. 

*cardiac cath in the very near future to measure pressures and prepare his conduit for a possible Melody Valve placement.  Even though he's considerably under the weight requirements for a Melody, and Dr Kaine already admitted Ethan would be the smallest kid he's done one on. 

This kind of makes me nervous. 

We have not yet spoken in person with Dr Kaine, and I'm a little frustrated. We have not taken getting a second or third opinion off the table, and I feel like I need to tell him that we are not unhappy with the plan or the care by any means, I just need to know if there may be other options out there. 

Because if we put a new valve in and it leaks over time like expected-and we already know the bald kid does not tolerate it, how many times do we do this?  Do the benefits outweigh the risks if this only buys him a year before we start this process all over again?  Are there any other options???

So many questions. 

So many unknowns. 

Lots of decisions for Brian and I to make. 

And I just need all the knowledge I can get to make the best decision possible for our little guy. 

For a kid with a just a virus, this sounds a lot like a heart issue.....

Sorry, I couldn't help it. 

Ok, I'm done being snarky, lets get this boy fixed!!! 

My handsome boy taking a nap with his specs on.