Day 14: #TeamEverly Update — We’re testing cutting back on Everly’s ventilator support even more since she’s doing well so far. We get a new neonatologist for 2 weeks starting tomorrow. Happy Fortnight Everly!
Today we celebrated Everly’s first 2 weeks outside the Baby Bump Motel. Time flies when you wake up each day not knowing what day it is. Based on how full the parking lot and the hallways are, we assumed it was the weekend, but that’s as close as we get to tracking the time these days.
Our first ventilator ween was from 35 forced mechanical breaths a minute to 30. This morning, our team thought Everly did well on 30. She did so well in fact, they are comfortable testing her at 25 mechanical breaths a minute.
They don’t know if we’ll be able to ween much lower, but I’m glad we’re able to slowly see how much Everly is willing to do. If she does well with 25 mechanical breaths, the next step in weening may not be bringing the number of mechanical breaths down, but rather changing her ventilator mode to give Everly greater control over how much she’s willing to help out.
Everly needed two as-needed doses of morphine last night when she was getting fussy. She coughed up a bit of milk today after a feeding. We’ll be watching that closely. Yesterday Everly got upgraded from tape to a neobar that better secures her breathing and feeding tubes. Mouth care is much easier, we can see her sweet face better, and drool doesn’t get so trapped.
We said goodbye to the neonatologist who had us for 3 and a half days. We’re happy with what we were able to accomplish with him or her is such a short amount of time. Everly no longer needs IV access and we’ve begun seeing how much we can ween her from the ventilator. We start with a third neonatologist tomorrow. Our new medical lead will be with us for 2 weeks, so we’re excited about being able to build a good relationship and get started.
Please pray that the change in leadership will be great for Everly.
Thank you Lord that Everly continues to surprise us. She’s clearly still in the fight, which is so encouraging to see. As someone who is helping direct Everly’s care, I’m cautiously optimistic. As her father, I’m trying to soak in as much of Everly as I can while making sure she is getting what she needs. God’s showing us how to take things one day at a time.
I’m feeling a bit run down. I’m hoping to catch rounds tomorrow morning with Colby and then rest up all day to cut off anything at the pass. So, you get an semi inspiration rather than super inspiration post today. Bed is calling…
Everly is going through something tough, but boy has God been providing for her as well as us. We couldn’t do it without so many who have helped. The companies Colby and I both work for have been so amazing. We both get to be very present parents right now because of their support. Our medical team has been amazing. Our family has been amazing. The OI community has been so helpful. And our friends and new friends have been so encouraging. Every day we hear from someone being touched by Everly’s journey. Sleep tight Everly. Rest up for the next fight.
Today’s lesson: Your strength doesn’t run this town. It’s sleep.
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.
- Our new Neonatologist is a great fit for Everly.
Much love from Team Everly