Weary and Waiting

It was a long night for Samuel, and it's been a long day so far. Samuel's oxygen to his brain stays very low, and currently his oxygen saturation to his body is quite low too. He is continuing to decline.

We had a long talk with Samuel's attending cardiologist this morning, and he answered all our questions. He says Samuel will not be a survivor, and he called it "inevitable." He encouraged us to talk about what decisions we want to make -- if we want a DNR, if we want them to do chest compressions if his heart stops, if we want to take him off all the machines. We have no idea how to even approach these questions.

We just spoke with the nefrologist (kidney doctor), and he told us dialysis is not a good option for Samuel, and he wouldn't do it if Samuel was his son. At best, he thinks Samuel would pass away less puffy. He said that medicine is out of options for our little guy, and what we need is a miracle -- which by nature don't happen very often, but sometimes they do.

I had a very restless night last night. I stayed with Samuel until 2am at which point I was falling asleep on his guardrails. We were up at 6am to spend more time with him until shift change. We went back to bed during shift change, though I don't think much sleep happened.

When we came back in to see Samuel, he looked signifcantly worse than just a few hours before. We shed a lot of tears this morning, and the chaplain spent some time with us. Many nurses have been stopping by and giving us hugs -- which I have to say surprises me every time. I don't know how they have the emotional margin to hurt with all the parents who go through this pain. One nurse gave me a hug in the middle of the hall earlier which resulted in me sobbing, and another hugged me in the middle of the cafeteria with the same result. I am getting used to crying in very public places. Even the girl who serves the cafeteria food asked how I'm hanging in there. Compassion is both a beautiful and painful thing. It hurts me every time people show me compassion, and yet it blesses me too. And compassion by nature hurts those who show it to us.

Bryan and I asked about a private room for Samuel because our little dock is in the middle of the CICU. There are no walls between docks, and the desk around which doctors, RT's, and fellows cluster is right across from us -- 10 feet away. There are curtains they can pull around our space, and they have done so, but we feel exposed. However, moving him is a risky proposition, and, again, I can't help but wonder if God has us in the middle of everything for a reason. How can we be a light for Him even in the midst of these dark days? I pray for grace to love others and to weep for and rejoice with others even as our hearts are heavy and burdened for our own pain.

We are weary. We are sad. It is painful to see our son this way. Honestly, he looks dreadful. I am so glad Caleb and Joel came yesterday and not today. God was gracious in that. We so appreciate your prayers. This could go on and on, and it could end very suddenly. When I look ahead, it's overwhelming to imagine some unknown number of these days still to come, but God has given us the strength and grace for each day, so I will trust Him to do the same for each and every day ahead. Keep praying. We all need it.