So, with no other choices, we waited until the Spring. In the mean time, Bryce had the opportunity to attend a work conference located a few hours away from the Michigan hospital. We contacted the hospital and set up an evaluation appointment we could fly Elina out for after the conference. In the middle of our plans, our cardiologist called us and said the Michigan surgeon was suddenly unavailable - he was out sick - indefinitely!!
"Are you kidding me!!", I thought. How are the two surgeons in the entire country who can do this, out sick??? And they're from completely different states! Bryce immediately started researching the top hospitals in the nation. Calling, emailing and even talking to some of the top surgeons with no luck.
While all of this was happening, Elina's original surgeon from Primary Children's Hospital moved and a new surgeon took his place. The new surgeon has done a similar surgery a few times. As in, less than five times. We were able to meet with him after the heart cath last Friday. (He was super nice and won Elina over with his knowledge of Minecraft!)
He basically said, there's only about 120 pediatric cardiothoracic surgeons in the country and they all know each other pretty well. Many of them specialize in certain surgeries but there's not a single surgeon who specializes in left-ventricle ventriculotomies. Even if we found someone who'd practiced for 30 years, they might have done the procedure five or six times instead of three or four. Elina's condition is so rare and the surgery is done as a "last resort" because it can cause scarring on the left side of the heart. This can cause the heart to weaken or have irregular beats which can sometimes be fatal.
I once asked what would happen if we just left Elina's heart as is. She can live a long time with holes in her heart. But basically, because of the holes, her heart is pumping double the amount of blood to her lungs than normal. Eventually her lungs would give out and the chances of surviving a double lung/heart transplant is less than 30%. Ack! I feel like we have to choose between the best of two evils.
The surgeon went on to say that one possible solution is to place a patch covering the entire ventricular septum. He's never done that before and doesn't know how Elina's heart would handle the surgery. He can visualize doing the actual surgery but has reservations of the unknown. He ended the conversation by suggesting we sleep on it for a week. He actually knows both the Michigan and Tennessee surgeons. He's going to call them as well as one more surgeon to get their opinions if they think the surgery would work or not. We're going to have a conference call in a couple of weeks to see how we all feel about it.
Needless to say, it's been a very emotional weekend for me. I visited the temple on Sat and this morning as well trying to gain some peace and insight into what Elina's future holds. I felt so many different emotions this morning. What if these are the last weeks we have with our beautiful little girl. What if the surgery works but she can never have children because of a weakened heart? What if we hold off and she has to get a heart transplant in her twenties? So many what if's. As I sat and prayed in the Celestial Room I had a strong feeling to ask for the faith and prayers of others. I firmly believe there is power and strength in people uniting together in faith. We'd be so grateful for any prayers, fasting, good thoughts, positive vibes, whatever you feel the desire to send our way.
Elina's, obviously, having a hard time. She's much more aware of what another surgery means and the repercussions it will bring. She was so looking forward to a fun and exciting "summer before middle school".
We did stop by the Rowley's Red Barn in Santaquin to grab a milk shake on the way home though. (To make up for having six teeth pulled!)
