Well, we met with Evie’s ENT on Thursday to discuss a few things, but mainly to address the possibility of reevaluating the timeline for starting her surgeries. Our ENT did a great job of explaining why we need to wait.
Opening up her nose is really something that could be done whenever, but the main reason we need to wait is because of the state of her trachea. The scarring has likely completely cut off her upper airway and because she is so tiny, repairing it will be no easy task. The surgery itself may be fairly simple, but the recovery, including breathing through a healing trachea will be complicated and require a lot of energy. He’s recommending that when she is big enough in a few years that we travel to Cincinnati for the surgery and 2-3 week hospital stay. This is one of the top hospitals for this type of surgery and with such a complex case as Evie, this will be the best place for her. They’ll have the best equipment, top surgeons, and best understanding of how to deal with recovery. It’s always hard to hear that Evie is THAT complex of a case, but we’re grateful her ENT sees that and wants her to be seen by a top program.
The severity of the scarring also means she will never be able to use a speaking valve. We’re glad to know this now, so that we can push sign language more and give her a voice until the surgery is done and the trach removed. I wish we could hear her voice now, but it will be beyond incredible when it finally happens.
Also, we decided to go ahead and replace her ear tubes again. She has had near constant drainage so we’re going to see if there is granulation tissue around her tubes like last time. I’m glad we made that decision because her right ear started bleeding pretty badly last night. It’s looking better, but I’m anxious to get the new set of tubes.
So not very good news, but we’re not very surprised by any of it. I will let you all know when surgery will be as soon as we get it scheduled! Thank you all for your continuing prayers!