Saturday, August 15, 2009

Day 32-And we ride on...

So, the latest roller coaster dip happened today--Baby Boy is having trouble oxygenating his body, which is not surprising since he's got so little lung to work with, comparatively speaking. In addition, the right ventricle of his heart needs some support to pump blood as effectively as his left, since it was squished as his abdominal organs crept upward. What this meant today was that his heart rate would fluctuate widely and his oxygen saturations would dip into the low 80s.

After a pow-wow that included Dr. Jennings via phone, it was decided to put Rafa on nitric oxide, which is helping to relax the blood vessels in his lungs and allow them more surface area to absorb oxygen. His heart is getting support from a couple of medications as well (whose names I can't remember right now).

We've certainly entered a new chapter in our fight with Rafa against CDH, that's for sure, one that could be more rocky than the stint he had on ECMO.

Please pray for any or all of the following:

1. Nitric oxide continues to help Rafa's lungs
2. The respiratory techs are able to come down on some of the pressures on his vent settings
3. His vitals stay stable
4. He continues to pee off excess fluid as he's done so well all along

At this point, Rafa's pulmonary hypertension (tightening blood vessels in his lungs) is being controlled effectively. It must stay this way for him to thrive and survive. There are other medications that can be tried, if for some reason the nitric oxide is no longer effective. But we are in dangerous territory as we climb upward toward stability.

We praise Rafa for his strength, and God for his presence. We need both to continue on.


  1. We love you and we are with Rafa. Sending loving thoughts as always. Hang in there kiddo! You are doing great and we know you can do it!

  2. We're praying for stability and healing. We're with you all the way. Lots of love.

  3. Sending love & healing light...
    Love forever,

  4. keep going Rafa! We know you can do it. As always we send our prayers and loving healing thoughts.

  5. As always, our thoughts are with you. Little Rafa, we know you can do this. Keep breathing, brother!

    Josh, Margaret, and David

  6. Continuing to pray for little Rafa. He's come so far and just needs to get through this rough patch...he will. Love and prayers, Chanda