We are so happy with how Esther has been doing on ECMO. She is having time to rest and heal her body to prepair for surgery. There are a few times she worked herself up and her heart rate gets up there, but once they give her some sedative she calms right down. Here is a video of Esther awake moving a little bit and having the hiccups. I was told they used to completely paralyze babies on ECMO, but now they just sedate them so they can still move. You learn a few random facts when you sit around for hours.
Monday they are going to start testing her lungs to see how much air and pressure they can hold. Once she passes that test, they will check her heart to make sure it has had the rest it needed. If all of that looks good they can check to see how she handles being off ECMO. Then she will be able to come off of it. So if things go great it will still be a few days, but it’s moving in the right direction. After being of ECMO for a few days they will do the surgery to repair her diaphragm.
Right now I feel like it’s the calm before the storm. The ECMO is doing all the work for her so it’s keeping her pretty happy. Once she is off of it she will have to do all the work with the help of oxygen and many of the other things she was on before ECMO. Then after surgery most kids get worse before they get better. But we know it’s all in God’s hands so I’m trying to enjoy this peaceful time with Esther.
Today was great being able to walk back and forth from the renucci house. And to be able to let the kids, and me, nap. We have the room until Tuesday. We are praying that more space opens up and we can stay.
Noelle enjoying her nap today
