The Moment We've Been Waiting For

Rémi is having surgery tomorrow.

Just like that, the moment we've been been waiting for is here. You think I'd be excited that the waiting game was over. It's true that he needs this surgery before we can even consider going home. It's true that it will eliminate the need for the replogle tube providing lifesaving measures for him everyday, that the stress of this tube malfunctioning and sending us into a panic each time will be eliminated.

It's also true that I'm scared. This is a big surgery. Bigger than we had initially anticipated.

They will be doing three procedures at the same time. 1) Repair his esophagus 2) Tracheopexy and 3) Aortopexy. It will take all day, somewhere around 7 hours and his initial recovery will be at least 3-5 days in the pediatric intensive care unit where he will be heavily sedated and immobilized.

The first surgery to repair his esophagus we have been anticipating. After all, it's the main reason we are here. The Tracheopexy and Aortopexy are additional procedures added due to his blue spells. Three in total now.

In simple terms, they will stitch his trachea to the back wall of his chest, and to his aorta in the front. The idea is that with these stiches in place, it will pull the trachea open so that it cannot collapse on itself as it has been doing. We are hoping this eliminates his blue spells, and prevents additional trouble in his airway as we start to introduce food by mouth after his surgery.

You've probably noticed that we are hoping for a lot. There are a lot of unknowns with this surgery and answers that we won't have until after. Things are very dependent on how surgery pans out, as well as behavioural things on Rémi's part. Things like how will he react to food, can he swallow properly without aspirating, how much tension is his esophogus under and how well he recovers from the surgery.

For now, all we can do is wait and hope things go well for little Rémi. The next few days as parents are going to be excruciating. A new journey awaits us when they wake Rémi and we learn how to interact with him once more. Until then, all we can do is hope. Hope things work out how we anticipate and hope that he recovers well.

I'll try to keep up to date with his recovery, but I may be otherwise engaged these next few critical days in his journey.

Thanks for all your love and support. This is one big step towards home.