Sunday, May 22, 2016

God's Grace

The grace of God is real in situations that seem unimaginable. I have to start here. It is a truth in our lives right now.

God has seemingly primed us for the latest diagnosis for Judah. He was born with a diagnosis we'd never heard of before, and had the particular neonatal surgeon he needed for his first three surgeries right in Minneapolis, right where we were. God walked us through each surgery, each need, and showed Himself faithful. We've danced the ebb and flow of trusting God, facing fear, waiting, and seeing Him meet us. Our faith is fueled by the history of His movement in Judah's young life.

Now we face a new diagnosis for Judah: Portal Vein Hypertension. This has caused his enlarged spleen. This has caused his low platelets. This has caused his espohageal varices. This is the diagnosis we searched for almost a year to find. And we learned this past week, that this can cause even more complications down the road if not fixed. 



What are the options? There are many. But one is clearly the best for his longterm health: the Rex shunt.

The Rex shunt would essentially re-route the blood in the portal vein, creating a "bridge" between an existing entrance in the portal vein and an existing exit in the liver. The bridge would be formed either through a vein in the portal vein area, or from the neck. The Rex shunt allows the blood to flow at a normal rate into the liver, and be processed through the liver as it should. This is a relatively new surgery, and a major one. 

We met Dr. Nathan at Cincinnati Children's on Friday. We truly feel like being here, just a 2 hour drive from Cincinnati, is a provision from God. The Rex shunt is a highly specialized surgery, requiring a surgeon that is both a liver transplant surgeon, as well as a pediatric surgeon. Chicago has been a hub for the last several years for the Rex shunt, and there is a hospital in France that has also performed the surgery, and, thankfully, Cincinnati is another location that has someone, like Dr. Nathan, that can perform the Rex shunt. We were told they have done 15-20 Rex shunts over the last several years. Shew.

The big question is as to whether Judah is a candidate for the Rex shunt. Your anatomy has to provide the "entrance" and "exit" for the Rex shunt. So far, by ultrasound and MRI, Judah looks like a hopeful candidate. We are encouraged. 

We have a genetic blood test to get through first, and then we will get the surgery attempt on the schedule. We won't know for sure that Judah has the right anatomy for the Rex shunt until they open him up. We pray, and ask you to join us, that he will have just what he needs for Dr. Nathan to successfully perform the Rex shunt. 

I will continue to share our journey on here. Thank you for following our story, for providing listening ears, caring hearts, and prayer. We certainly couldn't do this alone. We are grateful for you and to God for ushering us through this time. Though we can be weak, He makes us strong. I see this in Judah. I see this in our home. I'm so thankful for our God who is active in our lives.