Saturday, July 25, 2009

Day 11-Another bridge crossed!

Rafa made it through his ECMO circuit replacement! YAY!

It was the longest hour and a half of our lives, but we made it, and so did he. Bravery of the Day Award goes to Grandma Sherrie for bearing witness to the entire procedure, talking our baby boy through, and being the person he could fix his eyes on when he got scared.

Yes, you read right: our little minx had his eyes open the whole time. Can we recall the last time he confronted adversity? It was on his birth day, and he came into the world with his eyes open.

Rafa will not back down from a fight, that's for sure.

The hour or so that followed was pretty hairy, more so for the family than for Rafa and his caregivers. His heart rate went up, as did his blood pressure. But given the stress that his body was put through in that short period of time, he handled it all extremely well, according to his nurse, Liz, and his ECMO technician, Christine. Dr. Klineman came to see us when it was all over and felt that he had done tremendously on this mini-ECMO wean (at one point during the procedure, they clamped off portions of the circuits, just like they will when he is ready to come off of ECMO).

Gotta say, we haven't been this tired in a long time, but it was all worth it.

Right before Grandma and Mommy left, we saw them put in a peripheral IV, like big people get when they are the hospital. Why is this so important? Because this means that A) his swelling has gone down considerably and B) he can receive platelets directly through the IV, as opposed to through the circuit, possibly leading to clots, and that will hopefully buy us more time with his current tubing.

Pictures will be forthcoming tomorrow, as it's been a few entries since we've added any.
Before I go, this morning's chest X-ray revealed 6 CCs of lung volume--only a small step back, but the more lung he can grow, the sooner he can come off of ECMO. We're concentrating on numbers between 10 and 12 CCs, so please do the same!


  1. Wow, Rafa never ceases to amaze me! He's a warrior for sure. And how wonderful that Grandma Sherrie was there for him throughout the procedure. Sending lots of love.

  2. Go Rafa!
    And shout out to SUPERWOMAN, Sherrie!!!
    Another excellent job, Team Rafa!
    You guys ALL inspire me!
    Love you - all four of you - SO MUCH!

  3. Amazing! What a strong family! for sure, we will be concentrating on 10-12 CCs lung volume...

  4. Go Grandma! 10-12 is my new mantra.

  5. Go Team Rafa! Thinking of all of you every day! All props to Grandma Sherrie!