BJ and I took Zadie down to CHOP today to see Dr. Javia, the ENT. We had met with him in December and he prescribed the Passy Muir valve (PMV - speaking valve) at that time. He wanted us to come back to check the pressures to make sure that it was safe for Zadie to use it. She ended up being sick a lot from January to April, and then had her palate repaired in May, so we didn't get back to him. Besides, we had pretty much decided to stick with St. Joe's for all of her care, so we didn't really plan on going back to CHOP.
Well, now that I'm not happy with the ENT at St. Joe's, and the craniofacial team there kind of dropped the ball on guiding us through all of this, we're kind of up in the air again. I feel terrible that Zadie is still not able to make sounds. My hope for the ENT visit today was make sure that the PMV was safe to use and then we could get working on it. Unfortunately, since no one has ever looked at Zadie's airway, the doctor wants us to hold off on the PMV for now. We have scheduled a bronchoscopy, which is a scope of her airway and is done while under general anesthesia. That will be happening on September 4, which is just a few weeks away. I'm anxious and excited to find out what's going on in her airway.
The doctors at CHOP are very fixated on doing a jaw distraction on Zadie. We are hoping it won't be a necessary surgery, so we aren't entertaining the notion right now. The fact that they are so gung ho about it is a big reason we shied away from CHOP in the first place. If we can avoid two additional surgeries (one to place the distractors and another to remove them), plus all the rough stuff to get through the procedure, plus all the risks involved, we would love to do so. It's not clear to us at this point that it's a necessary procedure. Maybe after the bronchoscopy, things will be clearer. I am pretty bummed that today's visit didn't go as I expected.
We are considering getting yet another opinion on a course of action. We are pretty much resigned to the fact that Zadie will have the trach at least through the winter, but we'd love to be on track to get it removed by the spring/summer of 2013.
On a positive note, Zadie had a hearing test, and did well, so I think the tubes are doing their job.
And on another note, I already know how lucky we are, but being at the Children's Hospital today, and seeing all the sick kids, I was reminded even more about how truly blessed we are. Zadie's good and happy and I know this all is just a bump in the road. I'm just looking forward to the day we can look BACK at this particular bump.