Do you have a one-on-one nurse at school, and on the bus?

[Melisande]

Yes, we have a 1:1 nurse (LPN) at school, at home, when ever we are not able to care for Donovan, essentially.

[Alethia]

My son attends a regular nursery. His carer comes to the house at 8am and I drive him and the carer to nursery at around 8.20am. She stays with him at nursery and I then take them home again at the end of the day. While he is on the vent, he will have his Home Vent care team, but once he doesn't need the vent during the day then the council will have to provide a trained carer to be with him at school. Since he's only trached to be vented then we hope that he won't need the trach for long after he's off the vent.

[Gretchen(Celia's mom)]

Celia's home health nurse goes to school with her! I would not let the school district hire someone of their own choosing and I would never let her go anywhere with out a trained professional that knows her well!

[T-bone]

Abby has a nurse that attends school with her. If she isn't available then I go to school with her. Her Case manager suggested once that Abby might have to share her nurse with another child if the need arised. I said, "NOPE". That will not happen. Abby doesn't have an airway problem at all, she needs her trach so that she can be vented while she sleeps. I believe that the trach warrants a nurse all to themselves. It is an artifical airway. That shouldn't be left to just anyone with a touch of knowledge.

Tess

[Nate's Mom]

Our school district contracts with our home health agency so we use our own nurse. She comes to our house in the morning rides the bus and cares for Nate at school. He is in an early childhood program. In the fall she is going on maternity leave and there is a terrible shortage of nurses, so I'm not sure how things will pan out. Presently they don't have anyone available to cover us when she goes on leave!

[Dylansmom]

In Indiana it is mandatory that Dylan have a 1:1 nurse with him at all times (school,bus,playground,cafeteria....) The nurse is provided and paid for by the school district.---
He would have to attend a "public" school for these benifits and be part of his IEP.

Brittany
________
Burn injuries advice

[bdarling]

Will has 2 day nurses for school. Both are 10 hour shifts - 7:45A to 5:45P. They ride the bus at 8A, stay at school for the day, ride bus home and arrive around 3:15, then stay at home until I get home at 5:45. The school is suppose to pay for this, but I believe medicaid does instead. There is some handwaving about "it all comes from the state anyway" like the state would pay the school back if they paid it. I think b/c it is through medicaid, I am able to get the time after school, school vacations, and summer too. I would not be able to work if I didn't have all those hours covered, and that would not happen if the school did not require it.

- betty

We live in Ontario Canada so our school system is a bit different. We currently have a 1 on 1 with Colin (our son) every day. He is in Sr. Kindergarden this year (every other day full days). We are currently having a battle with the school board however over them wanting him to have a "Trach Cover" while at school all the time. Colin is in a regular class, he has his trach due to brain stem damage at birth (he has no gag reflux and cannot swallow). I would like to ask those who have kids in school what was the stance from the school on your child having their trach uncovered? Right now they want him to wear a Humidity Mask that we only uses when he sleeps (we have him on humifide air while he sleeps). There reasoning is because he "coughs" all over everyone. We NEVER have this problem at home. Today we went a step farther and sent him with a Humid Vent, but at the cost of them really don't want to be sending them everyday. We have to watch our funding since Colin doesn't have a "name" for his medical problems just stem damage that caused no gag along with a few other problems.

Any help or suggestions would be great. Colin HATES having the humid vent on his trach and doesn't like the masks to much either.

[T-bone]

Does Colin tolerate a speaking valve? Abby wears one while she is at school.
What about wearing a loose fitting hankercheif over his trach?
Does he go to school with a nurse?
Can you teach him to cover his trach to cough? Using his sleeve?
Tess

I guess I'll start with yes it is a RN (RPN) in class with him. We are actuallt fighting school board to hire our own DSW that has been part of Colin's life since birth. She knows how to keep him on task and is basically part of our family.

We have a PMV but Colin has hated it ever since we got it.

We have never tried a handerchief with him. It might be a way to go. (Or atleast give a shot)

Today we ended up sending him with a humid vent. Only problem with this is the cost of them. I believe they are around $4.50 each here and they come directly from our very limited funding. With Colin not having a "diagnosis" (just brain stem damage) its hard to find much funding.

Teaching him to cover his trach is exactly what we are trying to do at home right now. However the school is arguing that it is not sanitary for the rest of the class for Colin to go around without something "just in case he sneezes or coughs". Colin has his ups and downs when it comes to secreations but never to the point they say he has at school. Its VERY rare to see him "shoot" secreations like they claim at school.

Thanks for your suggestions, I will definately pass them along to the wife to try and figure something out. Just a real pain when the school board doesn't want him in there school because of medical liability. Seems they will come up with any reason to keep him out of school.