And the beat goes on...

180......the number of hours I went without being able to hold my child. But when they put him in my arms today, it was like not a second had passed. The scars are fresh, the pain in his eyes is still very clear, but once we found the perfect position, the perfect RHYTHM, we both melted into each other. For one perfect hour the world faded away, the beeps were gone, no wire separated us and we were one.... for the very first time in 180 hours, all was right with the world.

That word has a different meaning to me now...rhythm. How rhythmic the heart is. How perfect the conditions must be in order for a healthy heart to beat in sync....so all must be right with a special heart for it to find its perfect rhythm.

I sat in a chair for days watching a wavy green line on a screen, willing it to calm its pattern and pick up its pace. Watching Xavier wiggle in discomfort. His heart was literally in a flutter. An uncomfortable flutter that caused his atrium to beat at 400 beats per minute, while his ventricle was going at a snails pace of 80 beats. Highly train doctors who specialize in the hearts rhythm were able to tell me why this was happening ( the atrium was cut, stitches were placed, scar tissue was causing a interruption of the heart electrical current) however they were unable to give me a perfect plan to help him. It was a ton of trial and error and the whole team was getting very frustrated that the cardio version wasn't working. We added and subtracted different medications in order to find the perfect cocktail. Everyone looked so defeated as they gathered that last time to shock his tiny, tired heart. I was at home, getting ready to head to the hospital when Nate texted me that they were about to do it. All I could do was hit my knees and literally beg God to allow it to work this time. I knew that doing a cath to break up the node that formed in his atrium was risky on someone so young and little...I knew that Xavier was strong enough, but I was positive that I was not. As I prayed a sense of calm overtook me and I knew that this time it would be successful.

The EP docs are so happy with how well his rhythm is. He found his beat and seems at this hour to be holding steady...but the battles continue in this war. His blood pressure has been raising all night. Could be withdraw, could be pain, could be depression. He still struggles to eat and to go to the bathroom. He has a fever and an inflammation marker in his blood has jumped from 2 to 24. He is very restless tonight and almost seems to panic....but in the chaos, I rub his head and sing to him. And together we find our rhythm.

This hospital has a beat of its own. Together, each person playing their different part, we will make some beautiful music together. In time, we will help Xavier heal...and he will leave this hospital better than when he came in. God is the conductor of this symphony. He keeps us in tune, in time and helps us always find our beat. Your prayers for healing are heard and answered. I can only pray that Xavier's story, his strength and the miracle that is his life is a testament to the power of God and that our story will bring others to the kingdom of God.

So here we sit, at CHOP doing all we can to heal our mighty warrior...working hard to stay in rhythm and to stay in sync....AND THE BEAT GOES ON.....