It's been a good day

Well folks....he's doing great today! We received the results to all of his studies and every single test was relatively normal. Kaden has successfully weaned off of O2 and thinks it's really cool. We went into the chapel together and Kaden said "Thank you God for helping me get better."Without Mestinon on board, his lungs are able to finally oxygenate themselves since we're at sea level. When we received the results of Kaden's echocardiogram, they found an interesting phenomenon called an AP Collateral. The AP Collateral is an extra vessel in Kaden's heart that doesn't actually belong there. His own little body created this vessel to help send oxygenated blood to his body. Pretty neat huh? Unfortunately if it becomes too large they will need to put a coil in it to sort of block it off. His cardiac episodes that we were seeing at home are rearing their ugly heads here too. They seem to be related to dysautonomia itself. It turns out that the general consensus believes Mestinon saved his life, but then became a threat itself, and is one of the culprits in Kaden's rapid decline, so he will remain off of Mestinon for the time being. It seems crazy to us, and we don't really understand, but know that it's not up to us when and what Kaden needs all the time. With all of the autonomic swings, the treatment will become an "as needed" drug. He will continue to have events and is now diagnosed with Enteric Nervous System Disorder. This disorder specifically involves his gut. He will still need help with his tummy for a while. The doctors also want us to follow up on the cAMP deficiency and consult with the geneticist at Greenwood Genetics Center to see if we can piece all of this together. We know that something is wrong on a molecular level, but are unsure of how significant that factor may be. After the team rounded this morning Kaden's PH probe was pulled as well. He is sitting quietly and happy. I pray for a good night tonight. We should be able to go home tomorrow. They are sending him home with an ACT monitor that will continuously monitor his heart rate. It has a cell phone built into it that will immediately call "LifeWatch", the dispatch center, who will then notify the team here of the different cardiac events, who will then call us and tell us what to do.
I'd have to say that this is all well and good, but I believe that both Brian and myself will still be on our toes regardless of the monitoring. So much information in such a short time. Whoo!....... This was a tiring week for everyone. Brian and Mom (Gran) have held down the fort so I could be here with Little Man. It's been a great team effort.
I will end this blog by saying that miracles can happen. I see it all the time. However, I believe all miracles are carefully orchestrated by our Heavenly Father, and without Him, who knows were we'd be. For now, we are here. For now, Kaden is doing better. For now, I think I finally understand what my purpose is.

Galatians 6:9- Let us not get tired of doing what is good. At just the right time we will reap a harvest of blessing if we don't give up.

We are blessed.

Love, Julie aka Mommy