Thursday, July 23, 2009

Day 9-"The sun'll come out tomorrow..."

Rafa continues to be in Annie's corner in terms of his zest for life, his willingness to fight, and his belief in the sunny side. He had a lot of action to put up with today and tolerated it well--between an overdue head ultrasound (which came out fine), two neighbors with many family members present and a lot of hubbub, a mommy who wants to fuss and fart over him all the time, and two stories read (one from Auntie Andrea and one from Mommy), he's darn right tuckered!

On to the medical updates: Dr. Chan, who has been overseeing Rafa's care since he was admitted to the ICU, shared with us many boons, including that his chest is almost empty of fluid, based on what they can tell currently. He is also not taking on any new fluid in his chest, which is hugely important. This means that, in theory, his lungs can continue to expand unobstructed. Rafa is still somewhere between 4-5 CCs of lung volume, so we need those lung chants and prayers to help what lung is there to keep on keepin' on. His numbers on the respiration scale are also looking up, as in, he's working just hard enough to sustain between 5 and 10 minutes of more than 10 breaths per minute, sometimes as many as 20!

All of this is great news, capped off by one of the big-wig attendings telling me that Rafa is doing "incredibly well," given everything that he's been through.

So why I am still so scared?

Because there's so much ahead: in the immediate future, a family meeting (tomorrow afternoon, most likely), and hopefully, movement toward an ECMO wean. In the long run, keeping his lungs and other major organs healthy and working through the various changes in his course of treatment. We have to keep his boat afloat, Team Rafa, for as long as he needs us to! Please stay on board with us, as you have so faithfully up until this point. He's feeling your energy and love, your belief in the promise of him, and it's all making such a huge difference in his life.

We can't tell you how much it all means to us. Just know that the best gift in the end will come to your children's birthday parties and make a giant mess...because he's his father's son.


  1. Scared is okay. So is hopeful. So is proud.

    You all have already been through so much, "so you gotta hang on til tomorrow!"

    Love you.

  2. Annie made it to "tomorrow."
    Dorothy got to Oz.
    Kara Thrace led the way to Earth.
    And Rafa will be at the parties - and I'll be making as big a mess as him!

    Scared is okay. We can all take turns holding the "strong conch."

    Love you, John

  3. know that we will be there with you along the way...

    Sending our loving thoughts and prayers.

  4. We'll set a place at the table, bake a cupcake for him, and pack a goody bag. He and Oliver are destined to become buds... and make a mess and cause trouble together!

  5. Count me as part of the crew on keeping Rafa's boat afloat. As for birthday parties - he'll have a "whale" of a time!