Photographs by Laurie @ Horizons Photography

May 1, 2015

a beautiful melody

We are on the flip side. That is a beautiful place to be. No more waiting, no more wondering, no more anxiety... just peaceful restoration. It has been a beautiful journey really, in an odd way. The love we as a family felt through out this process has been unprecedented. My email and texts notifications were continuous through out the entire process, reminding me of prayers being sent up from all over the world. Friends and strangers a like have gathered us up and held us before God and we have felt the arms of love and support surrounding us. We have witnessed the amazing capabilities of modern science, we can see first hand where research is taking us and it's surreal and awesome. We knew fear and anxiety before the this started, Josh expressed the fear of dying after his pre-op appointment and the response was an out pouring of red shirts, shoes, hats and ribbons at church on Sunday morning and flooding Facebook in the days leading up to the surgery. I can't tell you what that does to a person, to see an ocean of red before you, person after person walking past you to go to the communion rail, all red. Josh and I sat together and watched in awe, tears were streaming down my face as the power of that support sunk in. The smile on his face brought us both peace and gave him the strength and courage that he needed.



On Tuesday when we got to the hospital the surgeon explained that there was a very real possibility that the valve wouldn't fit inside the remaining valve (the melody valve sits inside the old valve) and that we may need to have a special company come in to custom make a valve for him but it would take a few weeks. I can't explain why (other than God whispering to me)... but I told the doctor 'this might seem crazy to you but we are so covered in prayer today that I want to try'. So he did. The first words out of the doctors mouth when he came back to us after the surgery were 'well, it looks like those prayers worked'. The old valve was much narrower than they had anticipated and the new melody valve fit beautifully with no leaks. There was a complication with a scratched vein that caused a dissection and the blood vessel and the vein fused together. We were told it could require another surgery and we were sent to have an MRA (similar to an MRI). In the end they feel that the vein isn't as bad as they had originally thought and it should heal itself (it will require follow up at some point soon).

The melody valve in place

The damaged vein

The awesome cath. surgeon

Josh was in great spirits, he had a few moments of panic (right before they put him to sleep - I was allowed to be there until he fell asleep - he fought the mask and said he wasn't ready yet but I prayed for him and sang him a song and he drifted off. He also panicked in the MRA machine but again he rebounded and showed off his brave to the doctors and there was no need for sedation.) When he came out of the MRA he was so proud of himself and phoned his Dad to tell him how brave he had been. It was pretty awesome to watch. At one point (the night of the surgery I think) he turned to me with a wicked little gleam in his eye and joked about having survived.

So, that is the breakdown of the last week. We were discharged at dinner time last night! He actually went to school today (with activity restrictions) because he decided there was more activities to do there and he was bored after being home for two weeks.

God has been, and is always good. We have been so humbled by your generosity and love through out this whole process and quite frankly there aren't enough words to say how deeply we appreciate your support.

Some pictures of our week:
Josh was thrilled with being able to 'moon' the entire hospital while he waited for the surgery to start



Kaper had a difficult time, worried about Josh, so he came daily for visits.

They played spaceship... until the bed broke :S


Josh's visual skills used to describe what happened to him

He even had a special visitor



At 6:00 on April 30th he was discharged!