At least a couple of things happen when you hang around a hospital for 23 days. One, you find yourselves developing a sort of rhythm. We’ve tried hard to not act like we own the waiting room (so I won’t mention we’ve put up hooks on the wall that we can hang keys on…) but we have gotten used to a bit of a pattern. Much of the team sleeps at Alyse and Jason’s house, but those that sleep at the hospital get up and fold blankets and pile pillows. Then when the van with the little cousins arrives from the house, they take the kids out of the van and put the blankets and pillows in the van. We’ve adjusted to a way of managing the logistics of our day. We certainly hope to have this come to an end, but for now we have definitely developed a rhythm.
The people that would probably like our time to come to an end almost as much as us are the medical staff in the PICU. Mostly they want it to end because they love kids and getting them out of the PICU is their goal, they are outstanding at what do. The other reason they’d like to have our time come to a close is based on the second thing that happens when you are around a hospital for this long. You see, after 22 days of hearing nurses and pediatricians and neurologist and immunologists talk about their area of expertise, you become… well, you start to think… ok I’ll admit it, I think I pretty much know as much as the doctors at this point ☺. Not really, but you do start to form some opinions about a lot of things. I’ve been pretty good at keeping those thoughts in check, but I thought you might be interested in one particular opinion I’ve formed.
A couple of important disclaimers; first, I mean no disrespect of any doctors or their methodology. It goes without saying that I know next to nothing when it comes to what these doctors are dealing with, so please take most of what I’m saying lightly and as more of an illustration than anything else. But I’ve decided to divide everyone into one of two camps. I alluded to some of this in a previous post, but I’ve matured in my 23 days here at Doernbecher Academy (or maybe this is Justus Academy?). I call the one camp the “Chasing Justus” camp and the other the “Chasing Numbers” camp. Let me explain:
Some of the nurses and doctors seem to be more fixated on the numbers (heart rate, blood pressure etc.) than some of the others. I know some of you medical people reading this are groaning right about now because I’m reducing a complicated myriad of information as well as a decade of schooling and training into a simple grid of 2 categories. I know it’s not this simple, but like I said, keep this light and let me get to the end. So the chasing numbers folks make their decisions almost solely on what the numbers tell them they should do. Reading between the lines, it appears to be the safest way to go. After all, if someone ever calls you out for how you handled a patient, you have data to fall back on… their heart rate reached X and therefore I did Y. They (remember, keep it light) tend to set goals that are numerical – hence my naming that camp “Chasing Numbers.” The “Chasing Justus” folks seem more set on figuring out what Justus is telling them. Granted, sometimes he tells them with his heart rate or blood pressure. But they are really interested in getting Justus to prove what he can and can’t do. They don’t want to trust numbers but they seem to really want to know Justus – hence the term “Chasing Justus.”
But isn’t that how God is? When I’m telling kids about Jesus, I’ve often used the story of Zacchaeus. If you went to Sunday school as a kid then you know the story, you might have even learned the song. Zacchaeus was a tax collector despised by all of his countrymen. And one day when Jesus was in town, Zacchaeus wanted to just get a look at this Rabbi or spiritual leader. The bible says because Zacchaeus was so short, the crowds prevented him from seeing Jesus as he passed by. So Zacchaeus climbed up in a sycamore tree to get a better look. But when Jesus came by, he stopped and called Zacchaeus by name. And then he said, I’m coming to your house for dinner! He wanted to know Zacchaeus. I love Jesus today because he chased after me… a little like my favorite doctors are chasing Justus. Jesus cared about where I hurt. Not only did he know about my scars and mess-ups, He loved me in spite of them. Maybe that’s a hard thing for some of you to wrap your head around, I know it was for me. But for me, I’m able to make this journey today because I know the God of the universe knows me and loves me and wants to have a relationship with me. I promise I’m not trying to get you to believe what I believe, but I’ve tried to be honest with you this whole time. Too often when we think of God and church, its like the camp that chases numbers… people want to talk about adhering to a set of rules, or reading a certain number of chapters, or giving an amount of money. The truth is God is chasing you, not all of those numbers. And I for one am so glad, because quite frankly you wouldn’t be impressed with my numbers and neither would God. But in His ultimate grace, He loves me in spite of my numbers.
When it comes to Justus’ care, the reality is that both camps want the same thing and both camps are important. They both want Justus to be healthy. And truthfully, the two camps will ultimately merge. He is now down to 2.0 on his pentobarbital – down from a high of 4.5. He is doing really well so far. His brain hasn’t shown any seizure activity (he’s still on seizure medication) and he’s more and more active. I suspect that soon he will begin getting to the place where he should be aware. At that point, if not sooner, the two camps really become one camp. No longer will his blood pressure and heart rate be the key things, but how he’s reacting to touch and talk and other stimulus. The doctors continue to be very non-committal as to what we can expect as he gets closer to waking up. The MRI showed no more worsening of the effects of the encephalitis. But as both camps have said, the MRI is just a tool, it doesn’t paint the whole picture. What we really need now is to find out how Justus is doing. And in order to do that, we will need to chase Justus. And as we chase Justus, please pray for how he wakes up. I know they aren’t expecting much, but God hasn’t spoken yet. And that little girl I mentioned last night. Her name is Makayla, she’s 10 and it looks like she’s moving out of the PICU. We are so thrilled for her and her family!!! God is good. God is able. The moon is round!