Day 21 – Post #1 A Word From Onsite #TeamJustus

Thank-you #TeamJustus! We had a great night. I told you they had lowered the pentobarbital level at around 3pm. They prepared us for what changes might occur. Even so everyone was a little anxious as the hours ticked away. We had a bit of a scare at 8pm when they tried to do some of the routine care they do. He began to bite down preventing them from doing some of the things they needed to do. So they tried to put a bite guard in which they were unable to do (because he clenched his teeth so hard). Justus didn’t like all the fussing and he let us know – his blood pressure, his heart rate and his other vital signs all began to rise. He began biting down hard on his breathing tube playing havoc with the respirator. And he started to shake a little. Within minutes the room was full of staff – nurses and doctors gathering to figure out what was happening. The great concern, of course, was seizure activity. We kept assuring them this episode started because of the fussing. They decided not to treat it as a seizure and instead gave him some additional pain medication. Almost immediately he began to calm down. His vitals returned to normal actually quicker than his family’s vitals returned to normal. Seeing him shed real tears was a mixed bag for his loved ones. Even though the doctors tried to assure us he couldn’t feel anything, we knew better and it’s hard to think of your baby hurting. On the other hand, to see a little of “Justus” coming back was reassuring.

He got through that whole ordeal and settled back down for the night. Our team prayed hard for a good night, given his track record at night. That’s also why I asked specifically for prayer last night. God answers prayer! He had a great night. Thanks so much for praying – especially those of you that read the post last night and were able to pray specifically about those early morning hours. I know it bolstered those who were sitting with him.

And speaking of last night’s post, I woke up thinking about it some more. I hope it made sense to you. In a very real way this experience has brought to life the truth that God’s ways are higher than our ways. When I don’t understand what’s happening to Justus or a hundred other people I love, I can trust God because he does understand. I woke up thinking about this, will his recovery be instant or will we have a long rehabilitation? Again, I think I know the best answer for that! But this experience has taught me how little we really know about anything and how far beyond God’s thoughts are from ours. Which is why we trust God. He is the only thing who is 100% trustworthy.

One member of #TeamJustus has been at the hospital nearly the entire time is a young lady named Ginger. She has been like a surrogate daughter to Kelli and me. When Alyse and Jason found themselves in this crisis, Ginger dropped everything and came to support her friends (family). I thought it would be fun for you to hear her perspective on what she has been experiencing here at the hospital. I’ll end with her perspective but first let me give you the rest of the update. Because of the great night last night, they are deciding on whether or not to go down again on his pentobarbital. I think they will likely say yes. We are praying again for a boring night. There will be more physical movement again tonight. Pray that his brain stays calm and none of those movements are seizures. In addition, here are a couple of specifics, as he slowly comes out of this coma to pray for. The first is, they are removing his catheter, so pray he is able to go potty on his own. The second is to pray that his temperature stays normal. It is slightly elevated, not clinically a fever but something they are watching carefully. Lastly, as we were visiting with another family in the waiting room they were telling us about their 13 year old daughter who just had open heart surgery. I told them I would pray for their daughter. All of you have people in your lives that need prayer. Maybe not physical needs, but they need prayer. Tonight, commit to praying for someone you’ve been meaning to pray for.

Here is a perspective from my friend Ginger!

I am a control freak. Anyone who knows me will attest to this. Yet, God is constantly reminding me that I am not in control. He showed me that at a very young age and continues time and time again to tell me this. I can imagine Him shaking his head and just saying, “My child, I am your God and I am the one in control.” It’s a frightening, earth-shattering, “brings you to your knees” type of situation when you truly are humbled and have no choice but to sit with the fact that you don’t have control over a situation. That’s where I find myself today. As I watch one of my closest friends and her family that I consider to be my own go through something I have absolutely no control over. When you know that nothing you can say or do is the exact thing that they need.

I think it’s a natural human thing (or at least for a control freak like me) to wrack your brain on what you can do to feel like you have a morsel of control over a situation. I went into full control-mode: set-up a website, set-up place for donations, make a schedule for companions for Justus, befriend nurses, advocate for the best possible hospital staff we can request, constantly organize Justus’ room (we can’t have him wake up to a messy room he had no part or fun in messing up) and PRAY…relentlessly…pray…pray in real way more than I have this past year (I’m embarrassed to say). Scanning, brainstorming what else can I possibly do to help control this hurt, this pain, this suffering that is happening to some of the people I love most in this world.

It’s a powerful moment when you feel God saying, “Come to me, all who are weary and burdened…” (Matthew 11:28) It’s an acknowledgement that the entire situation is out of our control. That’s probably the most maddening & frustrating parts of the current season we are in. Every time it seems like things are under control, we are pushed to pray more for God’s mercy and control over the situation. The past few weeks have been excruciating and I am challenged each day to bring my control & faith to Him. There have been countless moments where I have cried out to Jesus to provide a miracle for Justus and sobbed, “Isn’t this enough?” I know God hears our cries and after I pray there is a keen awareness of who is the one in control. I stand firm in the belief that The Lord is in control and He has the ultimate say over Justus. And so I continue to pray…