Day 1

As soon as we got to the hospital, the tests began and we've been going ever since. Gavin had lab work, EKG, echo, stress test, ultrasound of kidneys and bladder and a chest X-ray. Gavin didn't last as long on his stress test as the last time. He became out of breath and tired after 9 minutes. He had a few changes on his EKG. The doctors just came up to talk to us and brought up some things we hadn't heard before. One of the medicines Gavin is on can cause exercise intolerance so they would like to try and wean him off of it. In the mean time they will continue the pre transplant evaluation and testing. They have decided to hold off on putting him in ICU and starting milinorone. Which is all encouraging because they want to rule out every possible sitaution before even considering him for transplant. So we kind of feel like we're back to square one of not knowing 100% of what is going on with him. I appreciate their honesty and not wanting to jump the gun on listing him. The doctor brought up that once you have a transplant at his age your starting the clock for the next one. They still plan to take Gavin back to the cath lab on Friday to measure pressures and look at the coils. Please pray that we get answers, that's all we want. It's so frustrating that Gavin has been on the decline this last year and we don't have any absolute answers. All we know is these fistulas are new and they are NOT common in a Fontan patient. So no one really has anything to compare him to. Thank you to everyone that has reached out to us today. We don't have the best cell service here and we are BUSY during the day!

 

Gavin and his heart buddy Caysen.

 

Gavin gearing up for his treadmill test.

 

Special visitors