Thursday, October 25, 2012

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!


Junior said...

wow, Lacey I am shocked that they think a medically involved kid like Jax should be in school with no nurse. Thats insane. Praying things will work out. Does he have a regional center worker who could help. Ours have been amazing when it comes to dealing with the school district.

Susan's Specials said...

I would get an are not talking about something minor you are talking about life or death here. He deserves a free and appropriate education with train and qualified staff. If that means he needs a RN to help manage his care through out the day, then the school will have to provide one! Keep fighting for what your son needs and deserves!

Anonymous said...

wow. that's just insane. i'm a special education teacher, and i've had two students in my class with a trach (one was also on a vent). they each had a nurse. they needed a nurse. sure, i could have learned to suction them, but as awful as this sounds, there's no time to be the teacher AND the nurse. i'm not sure of the ratio of jaxon's class, but i have a 12:1:4 (12 kids, 1 teacher, 4 aides) and despite how much help that sounds like, it's never enough. and the nurses, typically they are wonderful. they quickly learn their place in the classroom (don't treat other kids...stick with your child....keep quiet while a lesson is happening) and they become part of the classroom family.

shame on the school.

if jaxon is school age, his nurse SHOULD be covered by the school district (with a prescription from your dr), not your insurance. the reason is he needs the nurse to make school a safe environment where he can learn...the same as another child might need an adaptive chair, communication device or even books! i'm sure that differs state to state, but check it out. that's how it is here in NY.

good luck! i'm sure you'll be winning this fight!!!

Heather said...

Nothing goes easy. Especially those worth fighting for.

And fight for this. And there is no reason that he shouldn't have a nurse. How is the waiver coming and IHSS? A nurse should be in the mix as well and the district will, at the very least, need to provide a qualified one on one aid. He is a first grader in all reality and should be looked at as such and provided with the things and people to make that happen and under terms and conditions that keep him safe and happy and your mommy heart at rest when you are not with him. Period.

Second time today you received my 2 cents. Worth nothing! Did you get my FB messages?

Anonymous said...

How much experience does the school have with trach children? FYI, I'm in New York in a public school district with 900 children K-12, so a small district. We have two buildings, but all the children are on one campus. We have one RN. I know the school has had no experience with a trach student. Even with an RN I don't think I would want my child to be their first practice.
You know best what Jax needs. I'm sure you can win a fight to get him in that school with his own RN. I just hope that's enough. If I were you, I would feel more comfortable in a school environment with staff that have experience with children like Jax. You have said yourself before that you have had problems finding doctors willing and capable of treating Jax. It doesn't look like this will be any easier. I don't know if the district is trying to save money or if they just don't understand how medically fragile Jaxson is. Good luck and I hope everything works out.

Anonymous said...

I want to be his nurse! I have not even met him and I'm in love...... Plus I love all things school.
Btw it's not always this way. I went to school with my patient for 2 years. Her mom did her fair share of fighting in court over nursing......... But she got what her kiddo needed and never looked back.

Too bad I live too far.


Lisa L said...

I used to work at an alternative school for children with significant medical needs and cognitive impairments. Children with trachs had a CNA that was trach trained with them at all times and there were two nurses in the building for 8 classes. One RN and one LPN usually. Hope things go well! Keep us updated!! Sending Prayers!!!