A New Diagnosis?

Saturday definitely found Devin feeling more like himself. He actually wanted to do things, other than sleep or watch TV!

 We were told that in the last echo they did Friday morning finally showed swelling of the coronary arteries. They now knew they were dealing with an arterial disease, but because his body hadn't been responding to the Kawasaki treatments, they had to consider another alternative. The other possible disease they came up with was called Polyarteritis Nodosa (PAN). We were told Devin would have an MRI done on Monday to see if he had arterial swelling anywhere besides his heart.

 We borrowed some books and cars and Devin calmly drove those cars around.

 I actually got a smile from him for the camera!

 Devin seemed to be looking even better on Sunday! I left Mackenzie with Morian's mom so both he and I could meet with the rheumatologist together so she could go over the "plan" She basically told us again about the MRI they planned to do on Monday to check Devin's other arteries. Then she proceeded to explain what either diagnosis would mean in the long term (the PAN being worse). Either way, he will need to be monitored by cardiology (echos) periodically to check the status of his arteries.

 Devin was looking a lot less swollen on Sunday, mostly just his feet a little and his tummy still. His hands were actually normal-sized. But b/c they had been swollen for so long, they were all wrinkled, like how your hands look after being in the water for too long. He actually didn't have an IV at all. (By that time he had had about 7 or so IVs, in both hands and both feet. They had to keep giving him new ones and his little veins could only handle so much, especially when he was intubated and constantly getting medicine through those IVs.)

 I was able to get Devin to walk back to his bed after using the bathroom. I would hold on to him but he actually had both feet on the ground and he took steps. The first time he totally cried like the whole way and it broke my heart, but I knew it was for his good!