Monday, August 10, 2009

Day 27-Murky Waters

So...not really sure what to say about today.

It began with a quick meeting with Dr. Jennings who took a look at Rafa's chest X-ray from last night and saw improvement. His lung volumes made it up to about 5 CCs, which is also improvement over where things were over the weekend. We were also told that Rafa was being given Amicar, which is a clot-retaining medicine, to help stem him bloody chest tubes. While this does run the risk of clotting the circuit, we were told that his circuit looked pretty stable and that he should at least get a few days out of this new med addition. This left us feeling heartened and as though the medical branch of Team Rafa was back on it, and we could hope to move forward again.

Then, the medical/surgical team met with Dr. Jennings to decide on a plan of action, and the results of this meeting would turn into our "family meeting," which was nothing like the first one we had. Basically, Dr. Jennings and the new attending (can't remember his name) came back to Rafa's bedside and shared the following information with us:

1. Every good day on ECMO now is borrowed time. We knew that.
2. Rafa will remain on the conventional ventilator until Thursday, when they will try to expand his lungs again with the high-frequency ventilator.
3. If his circuit needed to be changed, it would be a setback, but he would be entering the circuit at 100 negative (basically, outputting more fluid than he's taking on, which will help him "dry out" overall and hopefully open up more space for his lungs to expand).
4. There are still a few tricks in the bag, but not many. Ultimately, his lungs have to grow, inhale, exhale, and retain oxygen in order for him to get off of ECMO successfully.
5. We should celebrate every day we have with him.

While we knew in our heart of hearts much of what was shared with us, it confirmed in a frightening way what we already suspected--if Rafa doesn't grow and sustain lung tissue, we will have reached the end of our road. His doctors seem as committed as ever to pulling out all the stops to save our precious one, and for that we are eternally grateful. But facts are still facts.

Daddy has, meanwhile, been back and forth from the hospital twice already when Mommy calls him to share that, this afternoon, Rafa's circuit has to be changed. The Amicar drip has clotted the circuit far faster than anyone anticipated and it has to be changed. So we three weather the circuit change, Rafa does beautifully in terms of remaining stable throughout, and now...we wait and see. Again.

Changing the circuit is a plus in terms of time bought, but since Amicar is being used to help keep him dry, we can't anticipate that this circuit will last as long as the previous two (ten and seventeen days respectively). Circuit change also comes with swelling, Rafa's great nemesis, which may or may not impact his lungs.

This is also a little boy who's been on a heart-lung bypass machine for four weeks now, which is a great testament to his strength, but it has its own peril, including brain bleeds, infection, septic shock (aka wide-reaching infection), etc.

So we're battling time, the circuit, swelling, and lungs that need to cooperate.

Our baby has scaled mountains before, and our great hope is that somewhere out there, angels can move a few of them out of the way for him and clear him a path.


  1. Thank you for such a lengthy update. What a battle indeed. We are fighting with you. We are hoping with you. And praying. And calling on angels!

  2. I'm thinking of Rafa all the time & never stop sending fairy dust and chants. Know that he is precious to many, many of us out here and we are all pulling for him, believing in him, and loving him. And you.
    Love forever, John

  3. I keep believing in Rafa and all of you. I'm still praying with all my heart.

  4. We are, as always, praying and sending our positive thoughts. We love Rafa and you all very much. Abuelita Celia sends her love as well.

  5. So much love your way through all of this. We believe in Rafa and in you. We are there with you all the time. xoxo

  6. I am praying my hardest for Rafa and sending all the strength I can muster his way. Love, Erica

  7. All of you -- Rafa, you, Juan, your family -- are an inspiration. I will continue to pray for healing and strength.

  8. We are there with you, supporting you, hugging you, cheering you and your little boy on. Thank you for the lengthy update and for keeping us informed. You are always in our thoughts. xoxo, d, d, j & o

  9. The three of us continue to marvel at the three of you every day. We love you all dearly and are keeping Rafa in the light. You are models of love. family, and devotion. Thank you for the blessing you are to the rest of the world.

    Josh, Margaret, and David

  10. Phoebe! I'm thinking about you and your fighting son all the time and sending him every lung expanding related thought in my body... love from seattle,

  11. We're thinking of you always. Thanks for the update. With much love and hope, Jocelyn and Mike