Wednesday, August 5, 2009

Day 22-Do we dare to cycle?

That's the question on most people's tongues in Rafa's world.

With his big surgery over and done with, Dr. Jennings and the respiratory team plan to consider cycling as soon as tomorrow! While this is an extremely exciting prospect, nothing in the land of CDH comes in simple packaging. Rafa's lung volumes have suffered a bit of a setback (from 12 CCs down to 4 CCs) since his surgery, for all of the usual reasons (fluid, darn fluid), but if things can get cleared up by then, they might still give it a go! In addition to that, cycling is no walk in the park. It's an at least one week process, and at any time, Rafa might tell us this is all too much for him, and it's back on ECMO we go. Why is this such a big deal? Because we've already been on ECMO for 22 days and in many ways, the sooner we can get off, the better.

Which leaves our precious one in the middle.

Ultimately, if it's a difference of a day or two, which it looks like it would be, that's OK. We can be patient. Rafa will take this at his own pace, as he has done from the beginning. And it's our job to hold on to the tail of his comet and ride it out!

Keep up the prayer chains and fairy dust! We're so close to getting to a safer, exciting place, and your help is really paying off!


  1. No problem Mama. More fairy dust showers headed your way!

  2. No problem. We'll continue sending our loving positive thoughts and prayers for 12 CCs and good cycling. Go Rafa!

  3. You have prayers coming your way from my church small group and myself :)