I know I haven’t been giving titles to any of these updates, but if I were going to title this one I’d call it, “Moving to the Tenth Floor.” We’ve had another wonderful day with Justus. He continues to show great progress, however slow it might seem at times. I’ve talked a lot about our amazing eyes. Well two days ago his eyes were pretty much stuck looking to his far right. He was able to on occasion and with a lot of work periodically move his eyes to center and even to the left, but not very often and for a very short spurt. Then yesterday, he began moving his eyes over to the left more often and was able to keep them there for several seconds. You could tell it was still a lot of work. In fact many times you could see him close his eyes, almost as if he were resetting them, and then open and move them to the left. Today, it was still work but he was able to regularly get his eyes to the center and left and hold it for extended periods of time. There were even times when his eyes seem to get stuck on the left side. That’s just one example of how he’s growing day by day. And as you can see by the picture for the second day in a row we were able to take him outside.
Along with that growth, they are continuing to wean him off of all the drugs. Given the half-life of pentobarbital he should be approaching a time when it will be all out of his system. He’s hardly taking any pain meds and it would appear there is no seizure activity. All of these things continue to be positive. As an impatient papa (what my grandkids call me), I can tell you I’d like it to move faster, but I’m grateful for progress. Also, his ability to protect his own airway continues to be an area he needs to improve on. We take for granted the simple task of coughing and yet that is what Justus must be able to do if he wants to be moved.
Which brings me to the “title” I’ve given this article – “Moving to the 10th Floor”. The PICU (Pediatric Intensive Care Unit) is not intended to be a long stay unit. It is, as its name implies, for patients that need intensive care. There were many nights when Justus was the only patient for our nurse. The PICU works very hard, first to provide world-class care and second to give life saving care to patients in very critical situations. Once the Lord uses the PICU to save a patient, then they work hard to prepare them to function on a normal floor. We were put on a “normal” floor when we first were admitted to Doernbecher. Our nurse cared for 4 patients, by the third day it was the PICU and we’ve never left. 26 or 27 days in the PICU definitely makes us an outlier. In other words, statistically, based on length of stay, our family would be off the charts!
But 26 or 27 days in the PICU also makes you familiar and somewhat comfortable with the constant nursing care and doctor check-ups. I know there have been times when we’d just get Justus settled down and someone new would walk-in and wake him up. It can be frustrating, but it’s also comforting. We know the different nurses by name and they’ve gotten to know us. I’m sure in the beginning they were drawing straws for who’d get stuck with the crazy family that has someone in the room 24/7. After 26 days I think some of them actually like us ☺.
So now they are talking about moving us to the 10th floor. It’s what you want, but it is a bit scary. We know it’s where we are supposed to go, but we are happy where we are. He’s safe. I think that’s a picture of our life sometimes. I’m guessing there is someone reading this update feeling like they are supposed to move to the 10th floor and you are having knock down drag out fights with God to stay where you are. Not because you like it there, or because it’s better for you. In fact you probably know that’s not the case. But most of us will put up with a bad situation that we know, rather than subject ourselves to a potentially better but unknown situation, even if it hold promise and a hope. After all, we don’t know any of the nurses and nurses have four patients at any given time. And there isn’t even an RT (respiratory therapist) on the floor. And through it all God is sayin, “Trust me! Step into the elevator and push the button and trust me. “ As we’ve been learning, not that God promises a smooth and safe transport, but rather regardless of what we’ll face or what floor we wind up on, God will go with us and be there for us.
So as Jason, Alyse, Justus, and Amaya bravely prepare to push the button to the 10th floor, what is the 10th floor in your life? Please allow the Nikolao’s courage to encourage you. We’ve been learning to really pray… so pray about it. We’ve been learning to really trust… so trust God. And we’ve been learning about community… so let’s lift each other up through the power of prayer. Get on the elevator and push the button!