Tuesday, 5/31

Oh, it's going to be a big week for our wee one! First I'll tell you about his eye exam. Unfortunately the exam still showed stage 3 ROP (retinopathy of prematurity) but it's holding steady and hasn't worsened at all. The doctor compared the eye to a clock dividing it into 12 sections. He said they don't consider surgical treatment until 5 out of the 12 sections are impacted. With Dinky only 1 of his is so that's a good sign!

Now, for "the plan". I met with the surgeon today and things have changed a little from what we were previously told. The plan is to take him to the O.R. first thing on Thursday morning. How much they will do depends on how each step goes. The first priority is to dilate the esophagus. His has developed a stricture so it's like the "hourglass" I mentioned last week. They will insert a device that stretches it out. If this goes well, with no complications, they will move on to step 2. This step is to address the severe tracheomalacia in his airway. They will do a procedure called an aortopexy. Basically the aorta is lifted off the airway and sutured onto the sternum. This pulls it off the trachea to help open that up. This is my very basic understanding of the procedure. The surgeon said this only works in 2/3 of the cases (the statistic Martin and I have seen most often on the internet is 75%) but it has got to work for him. This kid needs a break!! While they do this procedure they will be doing a bronchoscopy at the same time so they will have some idea if it's working. If it's not they will, unfortunately, have to do a tracheotomy. This is when they make an artifical airway in his neck. He would need to keep this for several years and it is the least desired outcome. The only advantage is it will allow him to do things more developmentally appropriate because you're not constantly worried about the tube in his airway dislodging.

Whew. It's going to be quite a week. It is so incredibly scary but we've got to take this next step. Saturday will be 4 months since little Edison (see, I can call him that every once in a while) was born and we have got to work on getting him home.

I may not post tomorrow but the plan is for him to go to the O.R. early on Thursday morning so please keep us in your thoughts and prayers!