November 2 procedure

Ah, a long and overdo update… so sorry! I know a lot of you are on facebook and so you know how things are going. But for those of you who are not, I apologize. Levi had his surgical procedure on November 2, they went in and removed the stent that had been there for 6 weeks. It was completely covered in scar tissue, to the point where the doctor couldn’t even see it. Removing it did a lot of damage to his airway, it was very painful for him. I’m afraid that Doctors and nurses are now back to being evil people who just want to hurt him (in Levi’s eyes anyway). We were at Costco yesterday and a lady came up to us and Levi had a big smile on his face until she said she was a nurse… I couldn’t even get him to look up after that! Anyway, his airway was very irritated, very inflamed and just really torn up after the procedure. He did a round of steroids and two antibiotics hoping to help things calm down.
We have our next two scopes already scheduled. The first one is this Wednesday and then on the 30th. He wants to do another one two weeks after that and then take a long brake. After that he will check his airway again and maybe talk about removing the trach. The reason why we are going to have to wait so much longer is because of how bad his airway looked.
I’ve been meaning to write this update since our last appointment but it’s just been really hard to process all this information. This is just all very discouraging for me and I just feel like this is never going to end… the words that I’ve been hearing for almost 4 years now are really dragging me down.
On the other hand, Levi and Jesse are doing great! They are happy and active, smart and joyful. They are both super excited about turning 4, they talk about it all the time!
Please keep the prayers coming, we need healing… it makes me sick having to watch him go through all this and being put under so often… I wish there was a way around it…