Stanford Visit ** 700th Post **

We did it. We had a marathon of a day in Palo Alto and are totally exhausted. Owen was scheduled for a 8am echo, so we were up and to the hospital by 7:15 this morning. As soon as we checked in, we were told the echo was cancelled because he didn't need it. They did call to notify us, on our home phone, in Phoenix. Ha.

At 9:30 we had an appointment to speak with Dr Hanley. Dr H. was amazing, confident, intelligent and answered all our questions in less than 20 minutes. It was all we could have hoped for. More on that in a second.

We hustled over to the surgery center to get Owen admitted for his MRI. We had a long wait and spent most of the time in the play room. Carson set up Dominos as Owen destroyed them, over and over again. :) We shared the Dominos and continued playing with the Jenga blocks. Seriously, those are going on his Christmas list for sure. He loved them.
Carson was enjoying them just as much, if not more.

We moved into pre-op and Owen wanted nothing to do with the hospital bed. I don't blame him. He was really scared going into the cath lab in September, so we decided that it was time to try the Versed before hand. He was so loopy within minutes. He climbed into the bed and his eyes were so heavy.

And everything was funny. When we finally took him back to anesthesia, he couldn't hold his head up. He didn't fight the mask and was happy to be put under. It's never easy to watch his eyes roll to the back of his head and his limbs go limp. It was much easier knowing that we weren't holding him down while he screamed.
He was in the MRI lab for about 2 hours and was just as loopy coming out of anesthesia in recovery. He kept saying "home". Poor guy just wanted to break out of there. We made a pit stop at Cardiology clinic and talked to the NP, and then headed back to the hotel.
Now for the plan. The purpose of today's MRI is to show Dr Hanley the exact percentage of Tricuspid Valve regurgitation in Owen's right ventricle. As you know, he only has the right ventricle of his heart, so the valve between the atrium and the ventricle (the Tricuspid Valve) is severely leaking. Dr Hanley said on a scale between 0-10 where 10 is the most severe leak, Owen's is about a 7. This is a huge issue. If this wasn't an issue.. we'd be doing the Fontan (the last stage surgery) immediately.

Here's where things get complicated. Owen's right ventricle function (or squeeze of the heart) is showing only mildly decreased now. The problem is that his heart squeeze may be appearing better than it actually is. Right now, the severe valve leak is allowing the blood flow into the ventricle to regurge back to the atrium, allowing less work to the ventricle. If we fix that valve, the ventricle will have more blood volume to pump and the heart function (or squeeze) may get worse.

I added a picture of Owen's heart anatomy above. It helps to visualize it. There is no left side, so the RA (Right Atrium) pumps blood into the RV (Right Ventricle) and the Tricuspid Valve in the pathway. That is what needs repaired first. The blood that passes through there and into the RV is regurging back into the RA. Make sense?

Pending the results of the MRI....

Dr. Hanley would like to do an open heart surgery (soon) and repair Owen's Tricuspid Valve. That is the only way we could possibly get him to the Fontan operation. During that surgery, he will need to be placed on heart/lung bypass and he would give the repair a 50% chance of being successful. If he isn't able to repair the valve, he would go ahead and replace the valve with a mechanical valve. Recovery would be fairly quick and the risk is fairly low.

After this operation...

We would pray like crazy that Owen's heart function remains stable or gets better over the next six months. If things go as planned... he would have a chance at a successful Fontan operation next summer and hopefully not require a transplant for a while.

If the function decreases, which is an obvious risk, then the Fontan would not be an option and we would move forward with transplant as previously planned.

There is a chance that Dr Hanley repairs/replaces the Tricuspid Valve and the ventricle doesn't respond well and he would require an immediate transplant.

There is also the risk of death... but I won't even consider that as an option.

Why not do the Tricuspid Valve and the Fontan in the same operation?

This was a question that was answered in detail. The obvious benefit would be one open heart surgery, instead of two. The risk is just too high in Owen's case.

During the Fontan, heart/lung bypass is not required, making the recovery much easier. If Dr Hanley were to repair Owen's valve and do the Fontan in the same procedure, he would require heart/lung bypass to work on the valve and the recovery would be much more complicated. Also, as I wrote about earlier, we don't know if repairing the valve will cause his ventricle function to decrease until we do it. If his ventricle function decreases, this will make the Fontan unsuccessful and he would be a very sick little boy.

We left the meeting with Dr Hanley feeling very confident that we are making the right decisions for Owen right now. While we won't know if the tricuspid valve repair will be successful in getting him to the Fontan, we feel like we have to try. A successful Fontan is our ultimate goal.

We should hear from someone in the next week or two and hopefully get a surgery date scheduled (again, assuming the MRI results are positive). Exciting. Scary. Hopeful.