1/9/2015 Team Everly Update — The medical team thinks Everly is not getting better. They are presenting less and less options. The team may see if it’s possible to ween Everly from the ventilator tomorrow by setting it to deliver fewer mechanized breaths to see how she does.
Here is Everly’s mimi (grandmother) Janice giving Everly a pep talk tonight. She has a big day tomorrow. Everly was active and fun to be around today. Here’s a photo: https://www.facebook.com/photo.php?fbid=10152989057409695
The cruel thing is that Everly seems to physically being doing great when you look at her, but our medical team is explaining that inside, things are going all wrong.
The main goal of the medical team is to make sure Everly is not in pain. That’s their only goal at this point since they don’t think Everly has a shot to survive life without a ventilator.
We have the same goal, but we also have a few other loftier ones. We want Evelry to be liberated from the ventilator and we want her to come home.
Thankfully, the medical team is open to seeing if Everly is able to tolerate less ventilator support. If she is doing well enough tomorrow, we’ll move her from 35 mechanized breaths to 30 to see how she does. She currently initiates as many breaths as she wants, and the ventilator will add up to 35 mechanized breaths on top of hers.
Tomorrow could be the last opportunity we have for Everly to show the medical team that she is still in the fight to get off the ventilator. Please pray that God breathes life into Everly’s lungs.
Sometimes you have to hear something multiple times before it sinks in. We keep hearing from doctors that our daughter won’t make it. It started as a trickle. It wasn’t long since we only heard it once a month. Now it’s a constant drip.
I expect a message this sad takes some extra telling before it sinks in. The medical staff has been amazing at directly and delicately repeating the message.
We’re numb to the message now, but we don’t discount it. It could be our family’s reality. We live in reality. So does God. If God formed Everly’s ribs and lungs, He can heal them as well. He’s the one we look to.
In the Bible, we learn the story of Shadrach, Meshach, and Abednego. King Nebuchadnezzar wanted everyone to bow to a gold statue. They refused since they only worshiped God.
It’s usually a mistake to look up to someone in the Bible. Focusing on what we learn about God’s character is always a better bet. But I can’t help it. I’m drawn to how these men defended their position, while including an important caveat.
“If you throw us in the fire, the God we serve can rescue us from your roaring furnace and anything else you might cook up, O king. But even if he doesn’t, it wouldn’t make a bit of difference, O king. We still wouldn’t serve your gods or worship the gold statue you set up.” (Daniel 3, The Message)
Here’s the takeaway: God can save us from this horror, but even if he doesn’t, we will still serve Him.
If God takes Everly from Colby and I, it would be a deep cut that may never fully heal, but somewhere inside me knows God’s up to something and it’s bigger than me. He’s in charge and I’m willing to follow.
Some days I don’t know what fighting for Everly looks like. Lately it feels like I’m just showing up. I pray it’s more clear.
I pray God wants me to parade Everly across the world and show people how God has healed her at the point that doctors had no answers. But I’m ready for whatever God has to say. And I expect Everly will speak in some way on God’s behalf as well by either showing us she’s in the fight or by showing us she’s getting tired.
I take comfort in knowing God has taken the sting out of death for those who haven’t rejected him. Therefore, if Everly dies, it will hurt me more than her.
Here’s a hymn written in 1779 by John Newton about one of his best friends who he lost to insanity: https://www.youtube.com/watch?v=0cnEDUMfPXs
Newton describes how God uses pain to bring us closer to Him. Here’s a great introduction from local college pastor, Kevin Twit, if you want more context: http://indeliblegrace.bandcamp.com/…/introduction-to-i-aske…
Today’s lesson: Don’t ask for God to bring you closer to Him unless you mean it. It will hurt.
Please pray that:
- Everly will be able to breathe more on her own and we’ll be able to liberate her from the ventilator.
- God will bring us all closer to Him.
- Colby and I will clearly hear what God is telling us about each next step.
Much love from Team Everly