Wednesday, April 3, 2013


Once again it's been far too long since I posted! And again a lot is going on! For some reason Jax has a ton of air in his belly. I have to leave his tummy venting all the time now, which is just another accessory that hangs off that little body. Still waiting for his surgeon to get this J tube surgery scheduled. I call everyday, I have to be the thorn in their side to get things done! As of yesterday she said it was in the schedulers hands so I should be getting a phone call to schedule it soon. I just want it over with, because that surgery makes me nervous. Any surgery on the bowel is rough for him, and I'm worried about a long recovery and lengthy hospital stay.
We have a new worry, and we are working on getting into our new pulmo and ENT. His airway seems to be getting worse. Trach changes are horrific. His airway completely collapses when the trach is out. He turns all kinds of colors, and makes it hard to get the new one back in. It's become a two person job. I worry that he needs his airway repaired while still trached.
On to the great news. I think I've figured out the cause of Jax retching and vomiting. Yes, this mommy DOES know everything! His VNS! How in the world did I forget about that?? A huge side affect from having the VNS is coughing and vomiting. The vagus nerve is also responsible for vomiting! Even though the VNS is not working for him, it's still turned on, and it still fires every few minutes. We plan to talk to neuro and have it turned off, to see if that does indeed help! Whether or not they will take it out, I'm not sure. I will only do it if its tacked on another surgery. Too many possible surgeries coming up to add one more. I won't do that to my little man.
We are on a Disney get away right now. until Friday. Doing some things we've never done before, and a princess breakfast for our little princess! See you in a few days, we are going to relax and have some fun!!