Whirlwind

Sometimes I wonder if talking about everything that is going on with Jaxson just comes out to most people as mumbo jumbo. But for those who care, or understand, and for me, here it goes!

We have a whirlwind of appointments this week and next. They all will be last appointments before changing to our Cali doctors. (To which I still don't have a ped, by the way!)
Yesterday Jax had an allergy appointment. I almost canceled it, because he can't do the breathing test the boys do. And he can't really lay on his stomach and get the allergy tests on his back. But I'm glad I didn't cancel, because my ped really wanted it, and it turned out to be really useful info. My ped wanted him checked for allergies to see if that is contributing to his angry, red airway. They condensed the tests down from 43 to 20, and did it on his thighs so he could stay in his stroller. They did all outdoor allergies, dogs, cats, and some foods that could be in his formula. He tested negative for every. single. one! It is so funny because my two boys that look like me don't have asthma or allergies. My two blondies like daddy also inherited his horrible asthma and are allergic to everything outside!
But now that we know allergies aren't an issue, she wants his nissen checked to see if its intact. Her other opinion was he is refluxing into his airway. I told her that in the last week, he's thrown up, and I've found formula in his throat when he gags. So she ordered me to switch to J feeds until we have the upper GI on Thursday. The scary thing is, even if his nissen is not intact, I'm not sure that his surgeon will fix it a third time. It would definitely have to be open, not laproscopic, so they can try to keep it from slipping again. And last time he had it done, they couldn't get a line so they ended up doing a cutdown femoral. It was horribly messy and bled like crazy! He is just running out of all access! I don't want to do J feeds forever. It makes the stomach shrink, and trying to get him to tolerate belly feeds again after long J feeds can be quite the process!
Thursday is also our last neuro before moving. They will turn up his VNS again, and we'll talk about how its working. I'm starting to think it, like everything else, is not working. I'm still seeing the same amount of seizures. And most of the time I swipe the magnet, it does nothing. I'm feeling a little defeated in the seizure area, we've tried everything there is to try, and I think we may just plain be out of options.

Next Monday in pulmo, I don't think we'll make any changes there. So far after upping his PEEP, his lungs are stable. Thats always nice to say.

The buyers do an inspection on our house Thursday. My agent told me it was today, and I got all the kids out by 8:30, then he said, whoops, its Thursday!
Needless to say he had one angry customer!
But in between a lot of appointments and therapies, we'll be packing. Never a dull moment around here!