1/6/2015 Team Everly Update — The doctors think Everly is getting worse. We’re praying for Everly’s lungs to surprise us. In better news, Everly is less dependent on her IV.
An OI parent gave us a gift. It’s called a D*mmit Doll. It helps you take out your frustration without destroying anything else. It’s been the most appropriate gift ever.
Here’s a video of me trying it out after a rough day. That was a few days ago, and today has been much worst.
We had a care conference with our medical team. The consensus of the team is that Everly is in a very tight spot and isn’t getting better. She has pulmonary hypoplasia, which means her lungs never had the proper space to properly develop and grow.
Here’s the part of the meeting that stung. The medical ethics representative (basically the counselor and liaison between the parents and medical team) said, sure the medical team as a whole doesn’t have a deep knowledge of OI since it’s so rare. Only a handful of OI babies have been born at this hospital.
But, that doesn’t mean the medical team doesn’t have a deep knowledge of lungs. If you take OI completely out of the picture and the team were to just treat Everly’s lungs, regardless of how they got that way, they were, their prediction is the same. Everly’s lungs aren’t capable of working properly without heavy support.
I had a whole pep talk ready, but I didn’t have a comeback for that. What the counselor said made sense.
We trust our medical team and know they are trying to do what is right for Everly, so it’s hard that their words ring true. We have been amazed by their care. Even though they are already at this place, the medical team is ultimately looking to Colby and I to interpret what Everly is saying. Right now, we still believe Everly is saying “Hey, I’m in the fight!”
The medical team is still treating her based on our wishes to give her the best chance she has of a long, boring life that ends watching Doomsday Preppers and eating chicken nuggets into her old age.
We’re praying that Everly’s lungs surprise the doctors and that in the coming days we see Everly require less and less ventilator and oxygen support.
This is her primary battle. If we don’t win this one, the whole war is lost.
However, Everly is surprising us in a smaller battle. As mentioned yesterday, her umbilical cord IV is a ticking time bomb. It’s been 10 days since it was put in. Every day we leave it in carries with it a higher chance of infection. Or it could just stop passing fluids.
Our strategy is to ween Everly off of IV support rather than put in a second IV. There aren’t other IV options that carry heavy risks for Everly. And we think it’s possible to care for Everly without IVs by transitioning her pain medicine to be given orally rather than by IV.
Today Everly made the transition and she’s completely off IV pain medicine. She’s no longer receiving IV Fentanyl and in it’s place she’s receiving oral morphine. This is a huge step for Everly.
Besides pain management, her IV provided an access point for keeping Everly hydrated and for providing antibiotics when she may need them.
Both these challenges seem small compared to switching over pain medicine to oral drugs as she just wasn’t having it when we tried it before. The trick was increasing the base dose of morphine and then Everly tolerated the ween.
Everly has also been showing signs of needing less oxygen today as her morphine has increased. We don’t just need progress in this area though. Perhaps the more important thing we need in weening her from the ventilator is being able to reduce the amount of pressure the ventilator is using when assisting with breaths.
We know God is using Everly. It may not be in the way we want, but we’re trying to listen to God’s voice as we we are also trying to interrupt Everly’s.
We’ve been overwhelmed by how many people are praying for us and reaching out. Thank you thank you!
Today’s lesson: Having a stack of kleenexs in my pocket is my gift to the world.
Please pray that:
- Everly will be able to breathe more on her own and we’ll be able to ween her off of the ventilator.
- God will bring us all closer to Him.
- We’ll continue to become less dependent on the umbilical cord IV so that we can remove it.
Much love from Team Everly