Thursday, July 30, 2009

Day 16-There's still hope, but it comes with a price...

Had a lovely and largely quiet day with Rafa. Mommy shared Leo the Late Bloomer with him, care of two of his angels from the great state of Maine, and both very much enjoyed the quality time together. Rafa also seems to enjoy his Sleep Sheep, which came in handy this afternoon as Mommy tried to calm him in the throes of a particularly noisy time when a new patient was brought in to be his neighbor. Little Man didn't get much in the way of sleep last night, and was apparently wide awake, schmoozing the ladies (a.k.a. Nurses Diane and Kristen).

As far as poking and prodding is concerned, Dr. Alex put in a new catheter and Dr. Chen attempted to put in an arterial IV to replace the one in his umbilical cord that reads his blood pressure. Pretty low-key, given the prior 72 hours.

Here comes the heavy stuff...

Dr. Jennings, who promised us a plan yesterday, delivered, scary though it may be. Turns out that a portion of Rafa's heart is sitting on his right bronchial airway, which is what is preventing him from inhaling and exhaling air on his own. We didn't know this until afternoon, so imagine our shock when we heard how Dr. Jennings plans to resolve the situation:

1. Bronchoscopy to confirm placement of heart and airways
2. Reconstruction of airways
3. Shifting of heart and aorta to relieve pressure on right airway

This is evidently a very slow, methodical procedure that involves many hours, which is why Dr. Jennings has reserved the OR for the entire morning/day (can't remember which). There are certainly dangers and risks involved, but we have no other choice.

Except to breathe and pray.

Please join us in our efforts--this brings our commitment to his care and recovery to entirely new heights, and we need to stand on your shoulders to hold our boy in the light.


  1. Hello Dear Friends,
    It is amazing - and so encouraging - how much the doctors can do. When I read about the plans, I am filled with so much awe, hope, inspiration, and certainty that Rafa will be home soon.
    I am, as always, holding Rafa (and you all) in the light. I have "enlisted" a bunch of other folks in the "good thoughts campaign" -- my mom, dad, friends (Sheri in Illinois, Rich in Charlotte, Arlo in California.....), even my pets! My mom has her friends at her school chanting & sending vibes. Linda & I talk daily & he is always on our minds. Team Rafa gets bigger every day!
    Our precious little one is an inspirational soul who will continue to come through & teach us all how to face what comes out way.
    Love forever, John

  2. Beautiful comment John. And I second it. You have more shoulders to stand on than ever.

    And shoulders to lean on. You are all so strong and so brave.

    Especially Rafa.
    We love you.

  3. John nailed it! We love you and always have Rafa in our thoughts. He's a fighter!

  4. Love is a powerful healer, and you are loved by so many. We are breathing and praying , and sending you lots of love.