This thread has a synopsis of the saga thus far: http://www.orthodoxchristianity.net/forum/index.php/topic,47018.0.html
Tazzy saw a pulmonary specialist today. We ended up with more questions than answers. But the questions are heading us in the right direction.
Taz certainly has RAD. He hasn't been getting enough medication to manage it. So instead of Pulmicort once a day via neb, he is switched to 2 puffs twice daily of Flovent.
The pulmonologist really believes that there is *something* anatomical going on. His breathing sounds just awful when he sleeps no matter what position he sleeps in. So it was really wonderful that Taz decided to fall asleep during our visit so she could hear what he does when he sleeps. He will be having another swallow study in 2 weeks. After that they may scope him under anesthesia to check below the vocal chords for abnormalities. She explained the various things it could be. It was very interesting. But for the sake of brevity I won't go into it in depth. Basically they wouldn't actually *do* anything at this point if they find anything unless they see a reason it must be done ASAP. There are 3 possibilities; 2 are damage from intubation, 1 is congenital. One he could grow out of, one they would watch, and one they couldn't do anything about other than treat all upper airway infections quickly.
From her evaluation she had a concern about his heart. When he is sleeping his heart starts beating irregularly and slows down a great deal. We will be meeting a cardiologist to see how much of that is normal, versus a real problem.
The pulmonologist was *very* concerned about his weight gain. She wanted him to see a GI. When she found out we were already seen by GI, and they chose not to do anything, she was pretty shocked. She had us meet with a dietician. The dietician has put in orders for him to start on EleCare Jr. This will add about 1500 cals a day to his diet! We should have a chunky monkey soon! I had looked into this earlier, but our insurance wouldn't cover it. Children's is putting him on a program that will pay for it! This is a real blessing since we could not have afforded the 1k cost OOP each month.
Thank you to those of you that have been praying for this little guy. Please continue to pray for his medical team to find the right answers to help him to grow and thrive.