Tuesday, July 28, 2009


What a day...
More procedures than I can count, really, but I'll try: in order to find the source of the coagulation issues (why wasn't his blood clotting the way it should), the following happened:
1. OR tests
2. Belly ultrasound
3. Adjustments to the circuit
All of which (or none of which) helped to right the situation on its own.

Then came the campaign to empty his chest cavity. There's a bit more of an aggressive stance being taken on regaining the lost lung volume (but not lung amount). The tests to find the cause of the lack of progress included:
1. Chest ultrasound (not that much in the way of fluid in the chest cavity itself--onto the lungs...)
2. Bronchoscopy (revealed secretions, a.k.a. "gunk"--were told in one breath that the solution was simply to suction his chest more often, until the plan became...)
3. Rigid bronch, a procedure similar to a bronchoscopy, except now that the tube inserted into Rafa's lungs does not contain a camera to investigate what's going, but has suction of its own to directly remove the gunk and open the area up. This isn't happening until tomorrow morning so that he can have tonight to rest.

While all of this sounds daunting and overwhelming (which it certainly was for Mommy, Daddy, and Grandma), our stalwart champion faced the day with grace and stability. His vitals never wavered, he fussed a bit but was easily calmed down, and proved that he was, as he always had, ready to fight the good fight.

We are all drained and exhausted by the day, but incredibly grateful that, at his core, our baby is OK. His doctors are working hard to answer the question, "How can we open up his lungs as quickly, efficiently, and gently as possible?" And that's what we want, right?

Hope all of us get a good night's rest tonight...

We need Team Rafa to mobilize its forces like never before in this battle. We need Rafa's lungs to begin to open up and we need his procedure tomorrow to go smoothly. We are working somewhat against the clock, now that he's on his second ECMO circuit, and while progress always comes at its own pace and in its own time, we can never have too many thoughts and prayers lifting him up.

Oh, and before I forget, he got birthday presents today, of course: two cars from "Cars" and an Obama keychain that says, you guessed it, hope.


  1. We pray that your magical child and Team Rafa get both rest tonight and good news tomorrow. Barbara

  2. I hope you all rest well, especially Rafa.
    Love you all more than you know.

  3. My chanting is, "open up quickly & well."
    He knows how - his wonderful heart is already open wide - just like Mommy's, Daddy's, & Grandma's.
    Love you all forever!