Day 27 – post #1

I’m sitting here in Justus’ room. His parents are with him along with his nurse and a couple of nurse here to administer the plasmapheresis. A couple of things strike me as I consider what I’m watching. The first thing is the goodness of the Lord that we are in this place. No, it’s not lost on me that I’m in the PICU with my four-year-old grandson. But, a week ago, they were asking us to help my daughter and son-in-law figure out what they wanted to do in case of resuscitation. So to say we are grateful to be where we are is an understatement. Secondly, I’m struck with who in the world ever came up with the idea for this process. The pictures are of the blood coming out of and into the infamous femoral catheter in Justus’ leg. My layman’s explanation of what is happening is this: The blood is taken out through the “catheter” and run into the machine (the second picture). The machine uses a centrifuge process to separate out his plasma from his solids. Then his plasma is replaced with new plasma and recombined with his solids. This new “washed” blood is then returned to his body through the same “catheter”. Really? I’m a science guy and this sounds more like science fiction… but I’m told that is what is happening.

Now I’m sitting back in the waiting room. Several hours have passed since writing that first paragraph. I basically threw away the next two paragraphs and started in with this new one. You see, after the plasmapheresis started, it was supposed to take 75 minutes. They said the greatest risk was getting the catheter in – which if you’ve been following, you know has been fraught with plenty of drama and risk. But the plasmapheresis itself was supposed to be pretty straightforward and routine. They’d be in and out and Justus would hardly know they had been there. Well… it didn’t go quite like they’d planned. I won’t go into all the details other than to say they had a lot of trouble and it really ended up frustrating our little man. Ultimately they had to abort the whole thing and regroup; a big reminder that God and God alone is the great physician. Which brings us to where we are now, which is rethinking a decision that has had plenty of prayer and thought already. Do they continue with the plasmapheresis?

Kelli and I teach parenting. We know one of the greatest burdens as a parent we carry, right or wrong, is worrying if we did things right for our child. After all, when our kids are born, we’re thrown into this role of parent. Our child looks up at us with a great deal of trust in those little eyes. On the outside we’re thinking, “This little one is counting on me to come through for him/her”. Inside, most of us are screaming, “Ahhhhhh! I don’t have a clue what I’m doing!!!” But we do it and along the way we find ourselves learning things, making decisions, figuring things out for the first time hoping we don’t screw it up too badly and praying harder then we ever have before. That’s where Jason and Alyse find themselves. They haven’t gone to a special class to learn how to make the right decision about plasmapheresis. But, like all of us, whether the decisions have been big or small, we rest in God’s grace to direct us in our decision-making and then cover us, regardless.

So pray for Jason and Alyse as they consider all the same things they’ve considered before, but now with the addition of this latest failed attempt at the procedure. Right now, they don’t need your advice; they need your prayers more than anything. I know everyone has an opinion, as do all the medical experts, as do their families. But they carry the burden of deciding. What you and I need to remember in our decisions is God isn’t bound by what we decide. God is sovereign. He can do whatever He wants to do. We’ve known all along that God could heal Justus at any time and in any way He chose. He didn’t need a particular decision by the doctors and He doesn’t need a particular decision by his parents. It doesn’t mean you can carelessly make flippant decisions because, “oh well! God’s in charge.” No, books like Proverbs compel you to consider your plans, to use many counselors, to pray before making decisions. God expects you to take seriously your responsibility in making decisions. In fact I’d go so far as to say that’s part God’s plan is how you grow in making that decision. Just don’t take the next step and play God. Jason and Alyse must consider carefully their decision. But then God expects them to put the burden of that decision on Him. Don’t carry what God never intended for you to carry. Matthew 11 reminds us, “For my yoke is easy, and my burden is light.”

Before the procedure today the doctor was very excited about how Justus was doing. So much so that she was considering pulling Justus off the ventilator. After a hard session of plasmapheresis, they’ve decided to hold off on that. But, they want to take advantage of having him on a ventilator and get another MRI. I’ve worried that you might all be growing weary of praying and you’ve blown me away. Now I worry because yes, I’m asking you to pray again for an MRI – his 7th one. The last three MRI’s have been unchanged. The expectation is this one will be more of the same. But I’m asking we pray for an improved MRI, an MRI that makes Jason and Alyse’s decision easier. I’m so proud of those two and the way they have handled this entire journey. I’ve mentioned that part of our ministry is to marriages. I can tell you this, if there was ever a reason to work hard on having a “one-flesh” marriage, as the bible talks about, it’s for times like this when you find yourself in a storm. They have had plenty of opportunity to end up in a knock down drag out fight; instead they’ve done a wonderful job (not perfect) of showing grace, love and respect toward each other.

So a day that started out with incredible promise got very complicated. I find myself in the same place I started, struck by the goodness of the Lord. We’re here for a while longer, but our little warrior is getting stronger and stronger. For that we are grateful. Thank you for your prayers. As you look at the moon tonight, say a pray of thanksgiving that it’s still round, and pray for our little ninja and whoever else the Lord has laid on your heart. As the sun rises tomorrow, consider His mercies anew, and send up a prayer for Justus. And as you kneel tonight remind yourself, God is able and God is good. We love you.