The great school fight begins!

I guess it was wishful thinking that Jax would just magically have this fantastic entrance into the school world.

I was wrong!
I should have known it wouldn't be easy. Life with Jax just isn't.

I signed him up for school, and waited for the phone call from special ed. The teacher called me, originally thinking they were going to set him up for home school, because that's what his last Utah IEP says. But I told her we wanted to try school with him this year. She works at that school, so we talked a little about it.
Here's where it gets ugly. She told me that trach kids don't have to have a nurse with them.
It gets even worse. They only have two LVN's in the whole school, and not a single RN.
She said the teachers are trained to suction. Ok, that's cool, after all I can train anyone to suction. But I just did not feel right. The more I got input from other people, and the more I thought about it, the scarier it seemed. EVERY single person I talked to had at least two RN's on campus. And EVERY one I talked to said the trach kids have a nurse.
When I talked to the teacher yesterday on the phone to set up a home visit, I expressed my concerns. I guess the LVN was standing right there, so she got on the phone. Honestly, that actually made it worse!

LVN: have you ever used a bonkers?
ME: A what? You mean a yonkers?
LVN: Oh ya, a yonkers. Our trachs usually use those. And some do have those tubes with the numbers on them.
ME (with my jaw on the floor): You mean a suction catheter?
LVN: Oh ya. The nurse does have to do the suctioning if its that kind of suction, because thats deep suction.

Ahem....this nurse didn't even know what a suction catheter was, and lord knows you can't suction a trach with a yonkers suction. That is for oral suctioning. And are they going to call the nurse every time Jax coughs? She might as well just stay in his room all day!
What if Jax decannulated himself at school? While they are running around trying to find the nurse, who probably has never put a trach in, Jax is not breathing. The teacher kept telling me they aren't afraid to call 911, and they've had to do that many times. Yes, so have I! But I don't want 911 to have to be called on something that can be handled with a trained person. Jax can't afford any more brain damage, it would be a death sentence for him!
Bottom line, he doesn't go to school without a nurse. And a nurse that knows Jax.
I emailed my ENT, who said every trach has to have a nurse with them. Period. I'm arming myself with a letter from her when we do his IEP. I may even call pulmo and cardio as well, for extra protection. Because when the teacher came out today to meet him, she made it sound like if I wanted a nurse for Jax, he would have to do home school. I know the system has to give him the opportunity to go to school, even if it means getting him a nurse. They are probably trying to save money.
I really want to give him the chance to try school. I know the school is good, I'm in no way saying that its not. I think this teacher does some great things with her students. I'm simply saying I don't think they are medically equipped like they should be. Jax should be able to do all their stimulating activities too, not be stuck at home.
I go out to the school next week to meet the principal and the RN (whose not on campus every day) Please send out great vibes that they will understand what Jax needs, and we don't have to fight with the school system for Jax to have equal rights to attend! But if that's what we have to do, I'm prepared. Battle for Jax is what I do best!