Airway Reconstruction Surgery

On July 3rd with met with Dr. McClay here at the Dallas Childrens Hospital. He was referred to us by multiple doctors to check to see if he would take Carter case and do the surgery locally. We prayed very hard that we would be able to do it here instead of Cincinnati for obvious reasons. Dr. McClay felt very comfortable taking on Carter and has done a lot of surgeries just like his.  Wahoo!!! 

We were so excited, but then he put and IF into the picture. Turns out that Carter's reflux is way worse than we thought. Due the surgery he had back in the NICU that prevents him from throwing up we weren't able to see some of the more visible signs of it. Leaving his airway red and swollen and if not taken care of could undo the surgery. So if Carter's reflux doesn't get under control he will not perform the surgery until next year. The first available date he had open to do the surgery is September 17th. Seems far away, but we need the time to fix the reflux. The Reconstruction is a four part process spanning out over 2.5 months. The would put us at the end of November when the final one would be complete which is well into RSV season. The four surgeries have be done in the exact time table to be successful and he won't perform it any later because of RSV season which would be why we would have to wait until next year spring time. 

Right now we have doubled up his prevacid and started him on a new formula if you can even call it that. On the front it say medical food. It looks like that with a lot of vanilla added for flavor I guess. Carter is not a fan of the taste at all. I don't blame him. Say a prayer this works. Will ya please.

I try not to think too much about the IF, but if I am being honest every time he coughs or shows any signs of reflux I think about it which is quite a bit. Also we seem to keep falling into the IF category and I can't help, but think we might again. This surgery is SO important for Carter's developmental progress. having the narrow airway is holding him back in so many ways mainly feeding and speech. The older he gets the more imperative it is that we get these two things at least moving in the right direction and without the surgery we are stuck!

If you have talked to me I most likely haven't mentioned the IF to you because really I don't even want to think about it not happening. I am SO ready to be done with the trach.

With that being said here is our Surgery schedule for Sep-Nov (mostly for record keeping because I am sure none of you care that much about specific dates)

Sep 10th- Surgery pre-op 

Sep 17th- Surgery #1 Laryngotracheal Reconstruction

Oct 8th- Post op

Oct 15- Surgery #2 Dilation with stint and scar tissue removal

Oct 29th- Surgery #3- Dilation, Tonsil and Adenoids removed

Nov 12th- Post op

Nov 19th- Dilation, scar tissue removal, and TRACH REMOVAL!!!!!!

So for the surgery they will go in and take cartilage from his right rib. He will take the cartilage and graft it to the shape and size he needs it to be. After that he will make a smiley face incision in is neck and split his current airway open adding the new rib cartilage to then create the new airway. After he will have 2-4 incisions in his neck and chest for drainage tubes to be placed. Crazy right?!?! The doctor hopes that his hospital stay will only be 7-14 days at the most.  Surgeries #2 and #4 should be fairly simple and in and out of the hospital. He mentioned that his tonsils and Adenoids were enlarged so "we might as well take those out too" Hopefully that will be no more than a 4 day stay. Between surgery 3 and 4 they will cap him off meaning close of his trach and do a sleep study to see how he breathes IN and OUT his mouth for the first time in his life! SO exciting!!! So pretty much we will live at Dallas Children's from Sept - Nov and well to be honest we would be very happy to.