Re: Nursing issues with school (sorry-long)

[Guest guest]

Dear -

was placed into school with a tracheotomy and a g-tube. I had five

large file boxes stashed in the school's nurses office in case of emergency.

There was an extra suction pump, connectors, catheters, oxygen, a nebulizer

for breathing treatments, extra formula, and replacement g-tubes and trachs.

There was even an ambu bag. We had five day packs of every medicine

might possibly need on a " worst case " scenario. With earthquakes on

everyone's mind (we are in Southern California) everyone wanted to be

prepared for a five day emergency stay.

Initially was placed in the orthopedically handicapped classroom at a

site where there is a full time nurse. He has a one-on-one health aide to

perform the suctioning and tube feeding who also doubled as his sign

language interpreter (this was truly a one in a million find!) who I

trained. When moved to the DHH classroom, it was on a regular ed

campus with only a visiting nurse. I had to hold an " in-service " for all

teachers and aides in the DHH program. In the DHH class he had a one-on-one

health aide, who cared for him, his trach and his tube feedings.

Because the school was so terrified of a five day emergency stay, our

pediatrician and I had to sign off on at least two dozen medical

procedures - from daily to the most emergency oriented. As far as the tubes

coming out, it was understood that if was coming home that day, simply

keeping the old tube in place to prevent the stoma from closing would be

sufficient. I also left a foley catheter in the kit in case someone was

intimidated by the Mic-Key.

Basically the one-on-one health aide did all the feeding and suctioning.

The nurse only came by twice a year to make sure she was wearing her gloves,

and that all was well, and that all the supplies were accounted for and the

procedures signed off. We never had a single emergency at school.

I hope this helps-

best-

Yuka

Nursing issues with school (sorry-long)

> had her IEP for school and almost everything went well. It was 3

hours and we finished everything except for the nursing issues. She is going

to attend the school for the deaf / hard of hearing and everyone agrees this

is the best placement for her at this time. However, they do not have a

nurse at that school and is tube fed.

>

> This is all new to us because we have just recently started bolus feeds

to get her off of night feeds. She sees a nutritionist and the original plan

was for her to get one can after lunch and one can after supper. We tried

and that does not work. She starts dumping with just 4 ounces, so we started

doing 6 small bolus feeds and working up to what she can tolerate before she

starts the dumping. We have managed to get her to 5 bolus and her stomach

just won't take anymore in after that.

>

> The nurse from one of the other schools called me and said that they

could not get someone there 3 times a day for her feedings and wanted me to

put her on her pump when I send her to school and they would come take her

off at lunch time. I refused because I know that she will not want to eat

and the goal is to increase her oral intake to get her off the tube at some

point. I also pointed out that would not like to be restricted to the

pump and that she would pull the tube out frequently if we do that. They

finally agreed that they could get someone there twice a day and we have

worked her schedule out for that.

>

> Now, is going to start school on Tuesday and the nurse called me

on Friday to tell me that they have her emergency medical plan written and

would leave it at the school for me to look over and sign when she comes for

her first day. I mentioned that I would have a button kit to be kept at

school and asked where they would like it kept. The nurse then told me that

they have me down as the only contact if the button should need replaced. I

told her that I would need to go back to work at some point and I felt that

they should be the first contact for this. She basically told me that they

could not get there any faster than me to put it back in if they were busy

with another student at another school.

>

> The way this came across to me was that her time is valuable and mines

not. I also know that is smart enough to realize after just once that

they will call me if the button comes out and then anytime she wants Mommy,

she will pull it out. My thought is that they should be the ones called

first and I should be the last resort for this. I also live 30 minutes from

the school and if I am in the middle of something with one of my other kids,

I am suppose to drop everything and this does not seem right to me. I can

understand it if she is sick, but not for this.

>

> I plan to talk with them on Tuesday and try to work something out. I

think that they are not seeing the big picture here. The nurses have not

seen and were not at her IEP so I think that they think she can't

really do much. They only see her on paper and have read the labels and

assume the deafblind means the other end of the spectrum. I know that

doctors have seen her on paper and are amazed when they see her and tell me

that they did not expect her to be doing so much. I have tried to look for

information on what the law states for nursing in the school system and I

can't find anything. I want to talk to the nurses and see if we can work

this out, but I also want to have the information on the law to back me up

if I need it.

>

> If anyone can tell me how it has been for your child's school or where

to find the information on what is required for nursing in the school

system, I would appreciate it. Also, do you all agree with me that I should

not be the only contact person for this issue? I have thought about this a

lot and it just doesn't seem right to me.

>

>

> Mom to 3 yrs old on Feb. 17th!!!!!!! I can't believe we have made

it to this point!!!!

[Guest guest]

My son is tube feed and trached. It is a LIABILITY for

the school system NOT to provide him with a nurse. She

rides the bus with him and gives him his meds during

the day. There is another little girl who is tube fed

and she was put in the same class as because

there was a nurse. The nurse can not put in a feeding

button if it comes out but she can put in a foley to

keep it open and then when he gets home I can put the

button back in. I would stress that it is a liability

for them not to provied a nurse there to help her. I

would look at 's Law for the laws pertaining to

this issue. She has a right to a safe environment to

go to school and if that means she needs a nurse

present then they need to provide that for her. If

they refuse I would look into the disability law

center in your state. Sorry this is long winded but I

feel strongly in providing nursing care if it is

needed. It is not fair to her or you if you have to

keep coming in to the school to replace her button or

to feed her that is just wrong. That would be like not

feeding a kid with low bloodsugar just because it was

not lunchtime.

a

--- Lee wrote:

> had her IEP for school and almost everything

> went well. It was 3 hours and we finished everything

> except for the nursing issues. She is going to

> attend the school for the deaf / hard of hearing and

> everyone agrees this is the best placement for her

> at this time. However, they do not have a nurse at

> that school and is tube fed.

>

> This is all new to us because we have just

> recently started bolus feeds to get her off of night

> feeds. She sees a nutritionist and the original plan

> was for her to get one can after lunch and one can

> after supper. We tried and that does not work. She

> starts dumping with just 4 ounces, so we started

> doing 6 small bolus feeds and working up to what she

> can tolerate before she starts the dumping. We have

> managed to get her to 5 bolus and her stomach just

> won't take anymore in after that.

>

> The nurse from one of the other schools called me

> and said that they could not get someone there 3

> times a day for her feedings and wanted me to put

> her on her pump when I send her to school and they

> would come take her off at lunch time. I refused

> because I know that she will not want to eat and the

> goal is to increase her oral intake to get her off

> the tube at some point. I also pointed out that

> would not like to be restricted to the pump

> and that she would pull the tube out frequently if

> we do that. They finally agreed that they could get

> someone there twice a day and we have worked her

> schedule out for that.

>

> Now, is going to start school on Tuesday

> and the nurse called me on Friday to tell me that

> they have her emergency medical plan written and

> would leave it at the school for me to look over and

> sign when she comes for her first day. I mentioned

> that I would have a button kit to be kept at school

> and asked where they would like it kept. The nurse

> then told me that they have me down as the only

> contact if the button should need replaced. I told

> her that I would need to go back to work at some

> point and I felt that they should be the first

> contact for this. She basically told me that they

> could not get there any faster than me to put it

> back in if they were busy with another student at

> another school.

>

> The way this came across to me was that her time

> is valuable and mines not. I also know that

> is smart enough to realize after just once that they

> will call me if the button comes out and then

> anytime she wants Mommy, she will pull it out. My

> thought is that they should be the ones called first

> and I should be the last resort for this. I also

> live 30 minutes from the school and if I am in the

> middle of something with one of my other kids, I am

> suppose to drop everything and this does not seem

> right to me. I can understand it if she is sick, but

> not for this.

>

> I plan to talk with them on Tuesday and try to

> work something out. I think that they are not seeing

> the big picture here. The nurses have not seen

> and were not at her IEP so I think that they

> think she can't really do much. They only see her on

> paper and have read the labels and assume the

> deafblind means the other end of the spectrum. I

> know that doctors have seen her on paper and are

> amazed when they see her and tell me that they did

> not expect her to be doing so much. I have tried to

> look for information on what the law states for

> nursing in the school system and I can't find

> anything. I want to talk to the nurses and see if we

> can work this out, but I also want to have the

> information on the law to back me up if I need it.

>

> If anyone can tell me how it has been for your

> child's school or where to find the information on

> what is required for nursing in the school system, I

> would appreciate it. Also, do you all agree with me

> that I should not be the only contact person for

> this issue? I have thought about this a lot and it

> just doesn't seem right to me.

>

>

> Mom to 3 yrs old on Feb. 17th!!!!!!! I

> can't believe we have made it to this point!!!!

>

>

>

> ---------------------------------

> Relax. Yahoo! Mail virus scanning helps detect nasty

> viruses!

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

My son is tube feed and trached. It is a LIABILITY for

the school system NOT to provide him with a nurse. She

rides the bus with him and gives him his meds during

the day. There is another little girl who is tube fed

and she was put in the same class as because

there was a nurse. The nurse can not put in a feeding

button if it comes out but she can put in a foley to

keep it open and then when he gets home I can put the

button back in. I would stress that it is a liability

for them not to provied a nurse there to help her. I

would look at 's Law for the laws pertaining to

this issue. She has a right to a safe environment to

go to school and if that means she needs a nurse

present then they need to provide that for her. If

they refuse I would look into the disability law

center in your state. Sorry this is long winded but I

feel strongly in providing nursing care if it is

needed. It is not fair to her or you if you have to

keep coming in to the school to replace her button or

to feed her that is just wrong. That would be like not

feeding a kid with low bloodsugar just because it was

not lunchtime.

a

--- Lee wrote:

> had her IEP for school and almost everything

> went well. It was 3 hours and we finished everything

> except for the nursing issues. She is going to

> attend the school for the deaf / hard of hearing and

> everyone agrees this is the best placement for her

> at this time. However, they do not have a nurse at

> that school and is tube fed.

>

> This is all new to us because we have just

> recently started bolus feeds to get her off of night

> feeds. She sees a nutritionist and the original plan

> was for her to get one can after lunch and one can

> after supper. We tried and that does not work. She

> starts dumping with just 4 ounces, so we started

> doing 6 small bolus feeds and working up to what she

> can tolerate before she starts the dumping. We have

> managed to get her to 5 bolus and her stomach just

> won't take anymore in after that.

>

> The nurse from one of the other schools called me

> and said that they could not get someone there 3

> times a day for her feedings and wanted me to put

> her on her pump when I send her to school and they

> would come take her off at lunch time. I refused

> because I know that she will not want to eat and the

> goal is to increase her oral intake to get her off

> the tube at some point. I also pointed out that

> would not like to be restricted to the pump

> and that she would pull the tube out frequently if

> we do that. They finally agreed that they could get

> someone there twice a day and we have worked her

> schedule out for that.

>

> Now, is going to start school on Tuesday

> and the nurse called me on Friday to tell me that

> they have her emergency medical plan written and

> would leave it at the school for me to look over and

> sign when she comes for her first day. I mentioned

> that I would have a button kit to be kept at school

> and asked where they would like it kept. The nurse

> then told me that they have me down as the only

> contact if the button should need replaced. I told

> her that I would need to go back to work at some

> point and I felt that they should be the first

> contact for this. She basically told me that they

> could not get there any faster than me to put it

> back in if they were busy with another student at

> another school.

>

> The way this came across to me was that her time

> is valuable and mines not. I also know that

> is smart enough to realize after just once that they

> will call me if the button comes out and then

> anytime she wants Mommy, she will pull it out. My

> thought is that they should be the ones called first

> and I should be the last resort for this. I also

> live 30 minutes from the school and if I am in the

> middle of something with one of my other kids, I am

> suppose to drop everything and this does not seem

> right to me. I can understand it if she is sick, but

> not for this.

>

> I plan to talk with them on Tuesday and try to

> work something out. I think that they are not seeing

> the big picture here. The nurses have not seen

> and were not at her IEP so I think that they

> think she can't really do much. They only see her on

> paper and have read the labels and assume the

> deafblind means the other end of the spectrum. I

> know that doctors have seen her on paper and are

> amazed when they see her and tell me that they did

> not expect her to be doing so much. I have tried to

> look for information on what the law states for

> nursing in the school system and I can't find

> anything. I want to talk to the nurses and see if we

> can work this out, but I also want to have the

> information on the law to back me up if I need it.

>

> If anyone can tell me how it has been for your

> child's school or where to find the information on

> what is required for nursing in the school system, I

> would appreciate it. Also, do you all agree with me

> that I should not be the only contact person for

> this issue? I have thought about this a lot and it

> just doesn't seem right to me.

>

>

> Mom to 3 yrs old on Feb. 17th!!!!!!! I

> can't believe we have made it to this point!!!!

>

>

>

> ---------------------------------

> Relax. Yahoo! Mail virus scanning helps detect nasty

> viruses!

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

My son is tube feed and trached. It is a LIABILITY for

the school system NOT to provide him with a nurse. She

rides the bus with him and gives him his meds during

the day. There is another little girl who is tube fed

and she was put in the same class as because

there was a nurse. The nurse can not put in a feeding

button if it comes out but she can put in a foley to

keep it open and then when he gets home I can put the

button back in. I would stress that it is a liability

for them not to provied a nurse there to help her. I

would look at 's Law for the laws pertaining to

this issue. She has a right to a safe environment to

go to school and if that means she needs a nurse

present then they need to provide that for her. If

they refuse I would look into the disability law

center in your state. Sorry this is long winded but I

feel strongly in providing nursing care if it is

needed. It is not fair to her or you if you have to

keep coming in to the school to replace her button or

to feed her that is just wrong. That would be like not

feeding a kid with low bloodsugar just because it was

not lunchtime.

a

--- Lee wrote:

> had her IEP for school and almost everything

> went well. It was 3 hours and we finished everything

> except for the nursing issues. She is going to

> attend the school for the deaf / hard of hearing and

> everyone agrees this is the best placement for her

> at this time. However, they do not have a nurse at

> that school and is tube fed.

>

> This is all new to us because we have just

> recently started bolus feeds to get her off of night

> feeds. She sees a nutritionist and the original plan

> was for her to get one can after lunch and one can

> after supper. We tried and that does not work. She

> starts dumping with just 4 ounces, so we started

> doing 6 small bolus feeds and working up to what she

> can tolerate before she starts the dumping. We have

> managed to get her to 5 bolus and her stomach just

> won't take anymore in after that.

>

> The nurse from one of the other schools called me

> and said that they could not get someone there 3

> times a day for her feedings and wanted me to put

> her on her pump when I send her to school and they

> would come take her off at lunch time. I refused

> because I know that she will not want to eat and the

> goal is to increase her oral intake to get her off

> the tube at some point. I also pointed out that

> would not like to be restricted to the pump

> and that she would pull the tube out frequently if

> we do that. They finally agreed that they could get

> someone there twice a day and we have worked her

> schedule out for that.

>

> Now, is going to start school on Tuesday

> and the nurse called me on Friday to tell me that

> they have her emergency medical plan written and

> would leave it at the school for me to look over and

> sign when she comes for her first day. I mentioned

> that I would have a button kit to be kept at school

> and asked where they would like it kept. The nurse

> then told me that they have me down as the only

> contact if the button should need replaced. I told

> her that I would need to go back to work at some

> point and I felt that they should be the first

> contact for this. She basically told me that they

> could not get there any faster than me to put it

> back in if they were busy with another student at

> another school.

>

> The way this came across to me was that her time

> is valuable and mines not. I also know that

> is smart enough to realize after just once that they

> will call me if the button comes out and then

> anytime she wants Mommy, she will pull it out. My

> thought is that they should be the ones called first

> and I should be the last resort for this. I also

> live 30 minutes from the school and if I am in the

> middle of something with one of my other kids, I am

> suppose to drop everything and this does not seem

> right to me. I can understand it if she is sick, but

> not for this.

>

> I plan to talk with them on Tuesday and try to

> work something out. I think that they are not seeing

> the big picture here. The nurses have not seen

> and were not at her IEP so I think that they

> think she can't really do much. They only see her on

> paper and have read the labels and assume the

> deafblind means the other end of the spectrum. I

> know that doctors have seen her on paper and are

> amazed when they see her and tell me that they did

> not expect her to be doing so much. I have tried to

> look for information on what the law states for

> nursing in the school system and I can't find

> anything. I want to talk to the nurses and see if we

> can work this out, but I also want to have the

> information on the law to back me up if I need it.

>

> If anyone can tell me how it has been for your

> child's school or where to find the information on

> what is required for nursing in the school system, I

> would appreciate it. Also, do you all agree with me

> that I should not be the only contact person for

> this issue? I have thought about this a lot and it

> just doesn't seem right to me.

>

>

> Mom to 3 yrs old on Feb. 17th!!!!!!! I

> can't believe we have made it to this point!!!!

>

>

>

> ---------------------------------

> Relax. Yahoo! Mail virus scanning helps detect nasty

> viruses!

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Lee,

Makenna has had a nurse/aide since starting school. The aide (who is

a nurse) is with her the whole time she is at school. Granted when

we started Makenna had a trach, now all she has is her tube.

However, due to balance issues, vision problems, and feeding and med

administration we felt it best to have someone there at all times.

THe classroom teacher and classroom aide can not give her all the

supports she needs. Is in need of an aide? If so perhaps

she could be trained on the feeding tube, or perhaps they could hire

a nurse as her aide. just a few ideas. good luck,

katie

>

> had her IEP for school and almost everything went well. It

was 3 hours and we finished everything except for the nursing

issues. She is going to attend the school for the deaf / hard of

hearing and everyone agrees this is the best placement for her at

this time. However, they do not have a nurse at that school and

is tube fed.

>

> This is all new to us because we have just recently started

bolus feeds to get her off of night feeds. She sees a nutritionist

and the original plan was for her to get one can after lunch and one

can after supper. We tried and that does not work. She starts

dumping with just 4 ounces, so we started doing 6 small bolus feeds

and working up to what she can tolerate before she starts the

dumping. We have managed to get her to 5 bolus and her stomach just

won't take anymore in after that.

>

> The nurse from one of the other schools called me and said that

they could not get someone there 3 times a day for her feedings and

wanted me to put her on her pump when I send her to school and they

would come take her off at lunch time. I refused because I know that

she will not want to eat and the goal is to increase her oral intake

to get her off the tube at some point. I also pointed out that

would not like to be restricted to the pump and that she

would pull the tube out frequently if we do that. They finally

agreed that they could get someone there twice a day and we have

worked her schedule out for that.

>

> Now, is going to start school on Tuesday and the nurse

called me on Friday to tell me that they have her emergency medical

plan written and would leave it at the school for me to look over

and sign when she comes for her first day. I mentioned that I would

have a button kit to be kept at school and asked where they would

like it kept. The nurse then told me that they have me down as the

only contact if the button should need replaced. I told her that I

would need to go back to work at some point and I felt that they

should be the first contact for this. She basically told me that

they could not get there any faster than me to put it back in if

they were busy with another student at another school.

>

> The way this came across to me was that her time is valuable and

mines not. I also know that is smart enough to realize after

just once that they will call me if the button comes out and then

anytime she wants Mommy, she will pull it out. My thought is that

they should be the ones called first and I should be the last resort

for this. I also live 30 minutes from the school and if I am in the

middle of something with one of my other kids, I am suppose to drop

everything and this does not seem right to me. I can understand it

if she is sick, but not for this.

>

> I plan to talk with them on Tuesday and try to work something

out. I think that they are not seeing the big picture here. The

nurses have not seen and were not at her IEP so I think that

they think she can't really do much. They only see her on paper and

have read the labels and assume the deafblind means the other end of

the spectrum. I know that doctors have seen her on paper and are

amazed when they see her and tell me that they did not expect her to

be doing so much. I have tried to look for information on what the

law states for nursing in the school system and I can't find

anything. I want to talk to the nurses and see if we can work this

out, but I also want to have the information on the law to back me

up if I need it.

>

> If anyone can tell me how it has been for your child's school or

where to find the information on what is required for nursing in the

school system, I would appreciate it. Also, do you all agree with me

that I should not be the only contact person for this issue? I have

thought about this a lot and it just doesn't seem right to me.

>

>

> Mom to 3 yrs old on Feb. 17th!!!!!!! I can't believe we

have made it to this point!!!!

>

>

>

> ---------------------------------

> Relax. Yahoo! Mail virus scanning helps detect nasty viruses!

>

>

[Guest guest]

i cannot believe you do not have nurisng in your schools? Here in New

York that would be illegal, every school has at least one nurse and there are

3 kids i know of in our district that have their own one to one nurse,.

is one of them. I have heard of some schools that have their child go to

the nursing office to have them do the feeds. One of the students doesn't even

have a feeding tube and she has her own nurse. I would never allow a TA to

do tube feedings let alone suction.

Cathie, mom to erika

[Guest guest]

I would put a letter in writing to the Superintedent and director of pupil

services of the nursing requiremtents, and get your pediatrcian to back you.

There is no way they can not have a nurse in the school when there are

medical needs. What you explained are medical needs. Do you have a SEPTA

(Special

Ed PTA)? I am the president of ours and also a parent member for our

distrcit Committee for Specual Education. I sit in our meetings regularly., i

would call a meeting of administrators, and look further into the laws. What

state are you? You can go onto the states website and get your laws, i really

believe that legally they can get away without a nurse in a school. There is

the No Child will be left behind federal law the President Clinton passed. I

have a copy of it someone. It states that because a child has medical needs

they have a right to attend school and it is THE SCHOOL DISTRICTS

responsibility to provide that nurse. From what you have explained

needs these

are clearly nursing requirements that would require a skilled nurse with

esperience.

Cathie, mom to erika

[Guest guest]

,

Just curious - why does it have to be a nurse to do the tube feedings? I'm

just curious because here the TA's do it (teacher's assistants). There aren't

any nurses in our schools. I work with a little fellow that needs tube feeds

and suctioning and I do it all myself. Is it a US thing? Is there someone else

that can do it so as not to compromise the feeding plan? I wouldn't have the

school telling me how to feed my child - " I " set what her feeding times, etc are

- THEY can accommodate.

Let me know how it goes.

Weir

Home: lisaweir@...

Work: lisa.weir@...

Phone:

Web: http://ca.geocities.com/weirfamilyrogers

[Guest guest]

Dear -

was placed into school with a tracheotomy and a g-tube. I had five

large file boxes stashed in the school's nurses office in case of emergency.

There was an extra suction pump, connectors, catheters, oxygen, a nebulizer

for breathing treatments, extra formula, and replacement g-tubes and trachs.

There was even an ambu bag. We had five day packs of every medicine

might possibly need on a " worst case " scenario. With earthquakes on

everyone's mind (we are in Southern California) everyone wanted to be

prepared for a five day emergency stay.

Initially was placed in the orthopedically handicapped classroom at a

site where there is a full time nurse. He has a one-on-one health aide to

perform the suctioning and tube feeding who also doubled as his sign

language interpreter (this was truly a one in a million find!) who I

trained. When moved to the DHH classroom, it was on a regular ed

campus with only a visiting nurse. I had to hold an " in-service " for all

teachers and aides in the DHH program. In the DHH class he had a one-on-one

health aide, who cared for him, his trach and his tube feedings.

Because the school was so terrified of a five day emergency stay, our

pediatrician and I had to sign off on at least two dozen medical

procedures - from daily to the most emergency oriented. As far as the tubes

coming out, it was understood that if was coming home that day, simply

keeping the old tube in place to prevent the stoma from closing would be

sufficient. I also left a foley catheter in the kit in case someone was

intimidated by the Mic-Key.

Basically the one-on-one health aide did all the feeding and suctioning.

The nurse only came by twice a year to make sure she was wearing her gloves,

and that all was well, and that all the supplies were accounted for and the

procedures signed off. We never had a single emergency at school.

I hope this helps-

best-

Yuka

Nursing issues with school (sorry-long)

> had her IEP for school and almost everything went well. It was 3

hours and we finished everything except for the nursing issues. She is going

to attend the school for the deaf / hard of hearing and everyone agrees this

is the best placement for her at this time. However, they do not have a

nurse at that school and is tube fed.

>

> This is all new to us because we have just recently started bolus feeds

to get her off of night feeds. She sees a nutritionist and the original plan

was for her to get one can after lunch and one can after supper. We tried

and that does not work. She starts dumping with just 4 ounces, so we started

doing 6 small bolus feeds and working up to what she can tolerate before she

starts the dumping. We have managed to get her to 5 bolus and her stomach

just won't take anymore in after that.

>

> The nurse from one of the other schools called me and said that they

could not get someone there 3 times a day for her feedings and wanted me to

put her on her pump when I send her to school and they would come take her

off at lunch time. I refused because I know that she will not want to eat

and the goal is to increase her oral intake to get her off the tube at some

point. I also pointed out that would not like to be restricted to the

pump and that she would pull the tube out frequently if we do that. They

finally agreed that they could get someone there twice a day and we have

worked her schedule out for that.

>

> Now, is going to start school on Tuesday and the nurse called me

on Friday to tell me that they have her emergency medical plan written and

would leave it at the school for me to look over and sign when she comes for

her first day. I mentioned that I would have a button kit to be kept at

school and asked where they would like it kept. The nurse then told me that

they have me down as the only contact if the button should need replaced. I

told her that I would need to go back to work at some point and I felt that

they should be the first contact for this. She basically told me that they

could not get there any faster than me to put it back in if they were busy

with another student at another school.

>

> The way this came across to me was that her time is valuable and mines

not. I also know that is smart enough to realize after just once that

they will call me if the button comes out and then anytime she wants Mommy,

she will pull it out. My thought is that they should be the ones called

first and I should be the last resort for this. I also live 30 minutes from

the school and if I am in the middle of something with one of my other kids,

I am suppose to drop everything and this does not seem right to me. I can

understand it if she is sick, but not for this.

>

> I plan to talk with them on Tuesday and try to work something out. I

think that they are not seeing the big picture here. The nurses have not

seen and were not at her IEP so I think that they think she can't

really do much. They only see her on paper and have read the labels and

assume the deafblind means the other end of the spectrum. I know that

doctors have seen her on paper and are amazed when they see her and tell me

that they did not expect her to be doing so much. I have tried to look for

information on what the law states for nursing in the school system and I

can't find anything. I want to talk to the nurses and see if we can work

this out, but I also want to have the information on the law to back me up

if I need it.

>

> If anyone can tell me how it has been for your child's school or where

to find the information on what is required for nursing in the school

system, I would appreciate it. Also, do you all agree with me that I should

not be the only contact person for this issue? I have thought about this a

lot and it just doesn't seem right to me.

>

>

> Mom to 3 yrs old on Feb. 17th!!!!!!! I can't believe we have made

it to this point!!!!

[Guest guest]

Dear -

was placed into school with a tracheotomy and a g-tube. I had five

large file boxes stashed in the school's nurses office in case of emergency.

There was an extra suction pump, connectors, catheters, oxygen, a nebulizer

for breathing treatments, extra formula, and replacement g-tubes and trachs.

There was even an ambu bag. We had five day packs of every medicine

might possibly need on a " worst case " scenario. With earthquakes on

everyone's mind (we are in Southern California) everyone wanted to be

prepared for a five day emergency stay.

Initially was placed in the orthopedically handicapped classroom at a

site where there is a full time nurse. He has a one-on-one health aide to

perform the suctioning and tube feeding who also doubled as his sign

language interpreter (this was truly a one in a million find!) who I

trained. When moved to the DHH classroom, it was on a regular ed

campus with only a visiting nurse. I had to hold an " in-service " for all

teachers and aides in the DHH program. In the DHH class he had a one-on-one

health aide, who cared for him, his trach and his tube feedings.

Because the school was so terrified of a five day emergency stay, our

pediatrician and I had to sign off on at least two dozen medical

procedures - from daily to the most emergency oriented. As far as the tubes

coming out, it was understood that if was coming home that day, simply

keeping the old tube in place to prevent the stoma from closing would be

sufficient. I also left a foley catheter in the kit in case someone was

intimidated by the Mic-Key.

Basically the one-on-one health aide did all the feeding and suctioning.

The nurse only came by twice a year to make sure she was wearing her gloves,

and that all was well, and that all the supplies were accounted for and the

procedures signed off. We never had a single emergency at school.

I hope this helps-

best-

Yuka

Nursing issues with school (sorry-long)

> had her IEP for school and almost everything went well. It was 3

hours and we finished everything except for the nursing issues. She is going

to attend the school for the deaf / hard of hearing and everyone agrees this

is the best placement for her at this time. However, they do not have a

nurse at that school and is tube fed.

>

> This is all new to us because we have just recently started bolus feeds

to get her off of night feeds. She sees a nutritionist and the original plan

was for her to get one can after lunch and one can after supper. We tried

and that does not work. She starts dumping with just 4 ounces, so we started

doing 6 small bolus feeds and working up to what she can tolerate before she

starts the dumping. We have managed to get her to 5 bolus and her stomach

just won't take anymore in after that.

>

> The nurse from one of the other schools called me and said that they

could not get someone there 3 times a day for her feedings and wanted me to

put her on her pump when I send her to school and they would come take her

off at lunch time. I refused because I know that she will not want to eat

and the goal is to increase her oral intake to get her off the tube at some

point. I also pointed out that would not like to be restricted to the

pump and that she would pull the tube out frequently if we do that. They

finally agreed that they could get someone there twice a day and we have

worked her schedule out for that.

>

> Now, is going to start school on Tuesday and the nurse called me

on Friday to tell me that they have her emergency medical plan written and

would leave it at the school for me to look over and sign when she comes for

her first day. I mentioned that I would have a button kit to be kept at

school and asked where they would like it kept. The nurse then told me that

they have me down as the only contact if the button should need replaced. I

told her that I would need to go back to work at some point and I felt that

they should be the first contact for this. She basically told me that they

could not get there any faster than me to put it back in if they were busy

with another student at another school.

>

> The way this came across to me was that her time is valuable and mines

not. I also know that is smart enough to realize after just once that

they will call me if the button comes out and then anytime she wants Mommy,

she will pull it out. My thought is that they should be the ones called

first and I should be the last resort for this. I also live 30 minutes from

the school and if I am in the middle of something with one of my other kids,

I am suppose to drop everything and this does not seem right to me. I can

understand it if she is sick, but not for this.

>

> I plan to talk with them on Tuesday and try to work something out. I

think that they are not seeing the big picture here. The nurses have not

seen and were not at her IEP so I think that they think she can't

really do much. They only see her on paper and have read the labels and

assume the deafblind means the other end of the spectrum. I know that

doctors have seen her on paper and are amazed when they see her and tell me

that they did not expect her to be doing so much. I have tried to look for

information on what the law states for nursing in the school system and I

can't find anything. I want to talk to the nurses and see if we can work

this out, but I also want to have the information on the law to back me up

if I need it.

>

> If anyone can tell me how it has been for your child's school or where

to find the information on what is required for nursing in the school

system, I would appreciate it. Also, do you all agree with me that I should

not be the only contact person for this issue? I have thought about this a

lot and it just doesn't seem right to me.

>

>

> Mom to 3 yrs old on Feb. 17th!!!!!!! I can't believe we have made

it to this point!!!!

[Guest guest]

its liek that here to teacher aids or asistants and they do the

feedings and wat ever though i do admit if my tuvbe ever came out they

couldnt do that but they could do my gtube wafer changes they even ta\ook me

on camp and did the wafer bout three times the hole unit went ande the

teachers didnt call mum no acutaly this oen teacher she used to be a nuse so

theyd often go now where is miss sally to do urwafer LOL hugs brenda hope

this gets figured out

>

> ,

> Just curious - why does it have to be a nurse to do the tube

> feedings? I'm just curious because here the TA's do it (teacher's

> assistants). There aren't any nurses in our schools. I work with a little

> fellow that needs tube feeds and suctioning and I do it all myself. Is it a

> US thing? Is there someone else that can do it so as not to compromise the

> feeding plan? I wouldn't have the school telling me how to feed my child -

> " I " set what her feeding times, etc are - THEY can accommodate.

> Let me know how it goes.

>

>

>

>

> Weir

> Home: lisaweir@...

> Work: lisa.weir@...

> Phone:

> Web: http://ca.geocities.com/weirfamilyrogers

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

It must be a US thing. For liability reasons I would guess. I could not put

in a daycare center because they had to have a full time nurse on staff

and none of them had this. We used to have nurses in all of our schools and now

they have cut funding and we have 4 travel nurses who go to many schools. I did

let the nurse know that I was working on the feeding schedule and that whatever

we ended up with was going to have to work. The goal is to work for and

not working for them.

Weir wrote:

,

Just curious - why does it have to be a nurse to do the tube feedings? I'm

just curious because here the TA's do it (teacher's assistants). There aren't

any nurses in our schools. I work with a little fellow that needs tube feeds

and suctioning and I do it all myself. Is it a US thing? Is there someone else

that can do it so as not to compromise the feeding plan? I wouldn't have the

school telling me how to feed my child - " I " set what her feeding times, etc are

- THEY can accommodate.

Let me know how it goes.

Weir

Home: lisaweir@...

Work: lisa.weir@...

Phone:

Web: http://ca.geocities.com/weirfamilyrogers

[Guest guest]

I know that we don't have nurses in all of the schools here. They have cut the

funding for nursing and we now have 4 travel nurses in our district. I have been

trying to find the information on the law requirements for nursing and student

needs for our state and can't seem to find it. I live in Illinois. I don't know

if I am just looking in the wrong places or what. I know that for us at home, we

could not get nursing for even though she was on the feeding pump 24

hours a day, needing suctioning frequently and was on oxygen and a pulse ox when

sleeping, but I really thought it was going to be easier when she started

school. If I can find the laws on this in Illinois, I will be writing some

letters if talking to the nurses on Tuesday does not work.

NPTQueenie@... wrote:

I would put a letter in writing to the Superintedent and director of pupil

services of the nursing requiremtents, and get your pediatrcian to back you.

There is no way they can not have a nurse in the school when there are

medical needs. What you explained are medical needs. Do you have a SEPTA

(Special

Ed PTA)? I am the president of ours and also a parent member for our

distrcit Committee for Specual Education. I sit in our meetings regularly., i

would call a meeting of administrators, and look further into the laws. What

state are you? You can go onto the states website and get your laws, i really

believe that legally they can get away without a nurse in a school. There is

the No Child will be left behind federal law the President Clinton passed. I

have a copy of it someone. It states that because a child has medical needs

they have a right to attend school and it is THE SCHOOL DISTRICTS

responsibility to provide that nurse. From what you have explained

needs these

are clearly nursing requirements that would require a skilled nurse with

esperience.

Cathie, mom to erika

[Guest guest]

There might be in some provinces, but there aren't for sure anywhere around here

or most of the Maritime provinces that I'm aware of and I've been working in the

system for awhile. There's one public health nurse person for the whole school

district - that's it!

I don't think the mom of the little boy I work with would let just any TA do

the feedings/suctioning, etc. She knows me outside school and knows Kennedy/

that I tube feed at home and have lots of experience with suctioning, etc. I

don't mind a TA doing Kennedy's tube feeds - I figure that I'm not a nurse and I

learned how to do it (as well as my teenage sons, who also feed her) so I figure

that other responsible people can learn. Kennedy's TA as well as myself are

more of 1-1 TA's working just with the one student all day (although Kennedy's

does more other things for the teacher than me because of the more severe

medical issues of the little guy I work with).

We don't have much mandated by law up here like the IDEA down in the states

with regards to education so I guess that's why the Dept of Ed can get away with

not hiring nurses, etc. because if you want to hire " care " outside of school for

Kennedy from an agency - they say they HAVE to have an RN because she's tube-fed

(which is ridiculous to me - Kennedy doesn't need an RN because of that - but

that's my opinion - my sons have been babysitting her for years and are fully

capable as well as other people who I've trained).

Interesting to hear about the different legislations regarding nursing in

schools...thanks for sharing Cathie,

NPTQueenie@... wrote:

i cannot believe you do not have nurisng in your schools? Here in New

York that would be illegal, every school has at least one nurse and there are

3 kids i know of in our district that have their own one to one nurse,.

is one of them. I have heard of some schools that have their child go to

the nursing office to have them do the feeds. One of the students doesn't even

have a feeding tube and she has her own nurse. I would never allow a TA to

do tube feedings let alone suction.

Cathie, mom to erika

Weir

Home: lisaweir@...

Work: lisa.weir@...

Phone:

Web: http://ca.geocities.com/weirfamilyrogers

[Guest guest]

: you are SO RIGHT - if she needs a nurse, then she needs a nurse - keep

this frame of mind - they WORK for her.

Keep us updated..

Lee wrote:

The goal is to work for and not working for them.

[Guest guest]

Yuka, just curious--at what age did start school? Carmen will

be 2 in June and I'm trying to plan ahead. She has a trach but no

g-tube.

>

> Dear -

>

> was placed into school with a tracheotomy and a g-tube. I had

five

> large file boxes stashed in the school's nurses office in case of

emergency.

> There was an extra suction pump, connectors, catheters, oxygen, a

nebulizer

> for breathing treatments, extra formula, and replacement g-tubes and

trachs.

> There was even an ambu bag. We had five day packs of every medicine

> might possibly need on a " worst case " scenario. With earthquakes on

> everyone's mind (we are in Southern California) everyone wanted to be

> prepared for a five day emergency stay.

>

> Initially was placed in the orthopedically handicapped

classroom at a

> site where there is a full time nurse. He has a one-on-one health

aide to

> perform the suctioning and tube feeding who also doubled as his sign

> language interpreter (this was truly a one in a million find!) who I

> trained. When moved to the DHH classroom, it was on a regular ed

> campus with only a visiting nurse. I had to hold an " in-service "

for all

> teachers and aides in the DHH program. In the DHH class he had a

one-on-one

> health aide, who cared for him, his trach and his tube feedings.

>

> Because the school was so terrified of a five day emergency stay, our

> pediatrician and I had to sign off on at least two dozen medical

> procedures - from daily to the most emergency oriented. As far as

the tubes

> coming out, it was understood that if was coming home that

day, simply

> keeping the old tube in place to prevent the stoma from closing would be

> sufficient. I also left a foley catheter in the kit in case someone was

> intimidated by the Mic-Key.

>

> Basically the one-on-one health aide did all the feeding and suctioning.

> The nurse only came by twice a year to make sure she was wearing her

gloves,

> and that all was well, and that all the supplies were accounted for

and the

> procedures signed off. We never had a single emergency at school.

>

> I hope this helps-

>

> best-

>

> Yuka

>

>

> Nursing issues with school (sorry-long)

>

>

> > had her IEP for school and almost everything went well. It

was 3

> hours and we finished everything except for the nursing issues. She

is going

> to attend the school for the deaf / hard of hearing and everyone

agrees this

> is the best placement for her at this time. However, they do not have a

> nurse at that school and is tube fed.

> >

> > This is all new to us because we have just recently started

bolus feeds

> to get her off of night feeds. She sees a nutritionist and the

original plan

> was for her to get one can after lunch and one can after supper. We

tried

> and that does not work. She starts dumping with just 4 ounces, so we

started

> doing 6 small bolus feeds and working up to what she can tolerate

before she

> starts the dumping. We have managed to get her to 5 bolus and her

stomach

> just won't take anymore in after that.

> >

> > The nurse from one of the other schools called me and said that they

> could not get someone there 3 times a day for her feedings and

wanted me to

> put her on her pump when I send her to school and they would come

take her

> off at lunch time. I refused because I know that she will not want

to eat

> and the goal is to increase her oral intake to get her off the tube

at some

> point. I also pointed out that would not like to be

restricted to the

> pump and that she would pull the tube out frequently if we do that. They

> finally agreed that they could get someone there twice a day and we have

> worked her schedule out for that.

> >

> > Now, is going to start school on Tuesday and the nurse

called me

> on Friday to tell me that they have her emergency medical plan

written and

> would leave it at the school for me to look over and sign when she

comes for

> her first day. I mentioned that I would have a button kit to be kept at

> school and asked where they would like it kept. The nurse then told

me that

> they have me down as the only contact if the button should need

replaced. I

> told her that I would need to go back to work at some point and I

felt that

> they should be the first contact for this. She basically told me

that they

> could not get there any faster than me to put it back in if they

were busy

> with another student at another school.

> >

> > The way this came across to me was that her time is valuable and

mines

> not. I also know that is smart enough to realize after just

once that

> they will call me if the button comes out and then anytime she wants

Mommy,

> she will pull it out. My thought is that they should be the ones called

> first and I should be the last resort for this. I also live 30

minutes from

> the school and if I am in the middle of something with one of my

other kids,

> I am suppose to drop everything and this does not seem right to me.

I can

> understand it if she is sick, but not for this.

> >

> > I plan to talk with them on Tuesday and try to work something out. I

> think that they are not seeing the big picture here. The nurses have not

> seen and were not at her IEP so I think that they think she can't

> really do much. They only see her on paper and have read the labels and

> assume the deafblind means the other end of the spectrum. I know that

> doctors have seen her on paper and are amazed when they see her and

tell me

> that they did not expect her to be doing so much. I have tried to

look for

> information on what the law states for nursing in the school system

and I

> can't find anything. I want to talk to the nurses and see if we can work

> this out, but I also want to have the information on the law to back

me up

> if I need it.

> >

> > If anyone can tell me how it has been for your child's school or

where

> to find the information on what is required for nursing in the school

> system, I would appreciate it. Also, do you all agree with me that I

should

> not be the only contact person for this issue? I have thought about

this a

> lot and it just doesn't seem right to me.

> >

> >

> > Mom to 3 yrs old on Feb. 17th!!!!!!! I can't believe we

have made

> it to this point!!!!

>

[Guest guest]

Here in Ct it is something like 1 nurse to every 640 students.. regardless of

their need..That is the state regulations

We as parents need to stay on top of everything...In 's school there is a

full time nurse.

Ellen mom to 8

[Guest guest]

Dylan goes to a state school that has its own student health center. The

nurses teach staff how to give the boluses, and once that staff member has

been signed off by the nurses, they can then give Dylan his bolus

unsupervised. Primarily it is done by his intervener, but we also have a

few other people trained in case she ever misses a day.

I am the only way who changes his button. I know the nurses in the SHC

could change it, and some years I leave one there just in case, but I have

never had it change it in 6 years of school and I prefer to do it myself.

When Dylan was in preschool they were far more concerned about the medical

issues.

Kim

> had her IEP for school and almost everything went well. It was 3 hours

> and we finished everything except for the nursing issues. She is going to

> attend the school for the deaf / hard of hearing and everyone agrees this is

> the best placement for her at this time. However, they do not have a nurse at

> that school and is tube fed.

>

> This is all new to us because we have just recently started bolus feeds to

> get her off of night feeds. She sees a nutritionist and the original plan was

> for her to get one can after lunch and one can after supper. We tried and that

> does not work. She starts dumping with just 4 ounces, so we started doing 6

> small bolus feeds and working up to what she can tolerate before she starts

> the dumping. We have managed to get her to 5 bolus and her stomach just won't

> take anymore in after that.

>

> The nurse from one of the other schools called me and said that they could

> not get someone there 3 times a day for her feedings and wanted me to put her

> on her pump when I send her to school and they would come take her off at

> lunch time. I refused because I know that she will not want to eat and the

> goal is to increase her oral intake to get her off the tube at some point. I

> also pointed out that would not like to be restricted to the pump and

> that she would pull the tube out frequently if we do that. They finally agreed

> that they could get someone there twice a day and we have worked her schedule

> out for that.

>

> Now, is going to start school on Tuesday and the nurse called me on

> Friday to tell me that they have her emergency medical plan written and would

> leave it at the school for me to look over and sign when she comes for her

> first day. I mentioned that I would have a button kit to be kept at school and

> asked where they would like it kept. The nurse then told me that they have me

> down as the only contact if the button should need replaced. I told her that I

> would need to go back to work at some point and I felt that they should be the

> first contact for this. She basically told me that they could not get there

> any faster than me to put it back in if they were busy with another student at

> another school.

>

> The way this came across to me was that her time is valuable and mines not.

> I also know that is smart enough to realize after just once that they

> will call me if the button comes out and then anytime she wants Mommy, she

> will pull it out. My thought is that they should be the ones called first and

> I should be the last resort for this. I also live 30 minutes from the school

> and if I am in the middle of something with one of my other kids, I am suppose

> to drop everything and this does not seem right to me. I can understand it if

> she is sick, but not for this.

>

> I plan to talk with them on Tuesday and try to work something out. I think

> that they are not seeing the big picture here. The nurses have not seen

> and were not at her IEP so I think that they think she can't really do much.

> They only see her on paper and have read the labels and assume the deafblind

> means the other end of the spectrum. I know that doctors have seen her on

> paper and are amazed when they see her and tell me that they did not expect

> her to be doing so much. I have tried to look for information on what the law

> states for nursing in the school system and I can't find anything. I want to

> talk to the nurses and see if we can work this out, but I also want to have

> the information on the law to back me up if I need it.

>

> If anyone can tell me how it has been for your child's school or where to

> find the information on what is required for nursing in the school system, I

> would appreciate it. Also, do you all agree with me that I should not be the

> only contact person for this issue? I have thought about this a lot and it

> just doesn't seem right to me.

>

>

> Mom to 3 yrs old on Feb. 17th!!!!!!! I can't believe we have made it

> to this point!!!!

>

>

>

> ---------------------------------

> Relax. Yahoo! Mail virus scanning helps detect nasty viruses!

>

>

[Guest guest]

Dylan goes to a state school that has its own student health center. The

nurses teach staff how to give the boluses, and once that staff member has

been signed off by the nurses, they can then give Dylan his bolus

unsupervised. Primarily it is done by his intervener, but we also have a

few other people trained in case she ever misses a day.

I am the only way who changes his button. I know the nurses in the SHC

could change it, and some years I leave one there just in case, but I have

never had it change it in 6 years of school and I prefer to do it myself.

When Dylan was in preschool they were far more concerned about the medical

issues.

Kim

> had her IEP for school and almost everything went well. It was 3 hours

> and we finished everything except for the nursing issues. She is going to

> attend the school for the deaf / hard of hearing and everyone agrees this is

> the best placement for her at this time. However, they do not have a nurse at

> that school and is tube fed.

>

> This is all new to us because we have just recently started bolus feeds to

> get her off of night feeds. She sees a nutritionist and the original plan was

> for her to get one can after lunch and one can after supper. We tried and that

> does not work. She starts dumping with just 4 ounces, so we started doing 6

> small bolus feeds and working up to what she can tolerate before she starts

> the dumping. We have managed to get her to 5 bolus and her stomach just won't

> take anymore in after that.

>

> The nurse from one of the other schools called me and said that they could

> not get someone there 3 times a day for her feedings and wanted me to put her

> on her pump when I send her to school and they would come take her off at

> lunch time. I refused because I know that she will not want to eat and the

> goal is to increase her oral intake to get her off the tube at some point. I

> also pointed out that would not like to be restricted to the pump and

> that she would pull the tube out frequently if we do that. They finally agreed

> that they could get someone there twice a day and we have worked her schedule

> out for that.

>

> Now, is going to start school on Tuesday and the nurse called me on

> Friday to tell me that they have her emergency medical plan written and would

> leave it at the school for me to look over and sign when she comes for her

> first day. I mentioned that I would have a button kit to be kept at school and

> asked where they would like it kept. The nurse then told me that they have me

> down as the only contact if the button should need replaced. I told her that I

> would need to go back to work at some point and I felt that they should be the

> first contact for this. She basically told me that they could not get there

> any faster than me to put it back in if they were busy with another student at

> another school.

>

> The way this came across to me was that her time is valuable and mines not.

> I also know that is smart enough to realize after just once that they

> will call me if the button comes out and then anytime she wants Mommy, she

> will pull it out. My thought is that they should be the ones called first and

> I should be the last resort for this. I also live 30 minutes from the school

> and if I am in the middle of something with one of my other kids, I am suppose

> to drop everything and this does not seem right to me. I can understand it if

> she is sick, but not for this.

>

> I plan to talk with them on Tuesday and try to work something out. I think

> that they are not seeing the big picture here. The nurses have not seen

> and were not at her IEP so I think that they think she can't really do much.

> They only see her on paper and have read the labels and assume the deafblind

> means the other end of the spectrum. I know that doctors have seen her on

> paper and are amazed when they see her and tell me that they did not expect

> her to be doing so much. I have tried to look for information on what the law

> states for nursing in the school system and I can't find anything. I want to

> talk to the nurses and see if we can work this out, but I also want to have

> the information on the law to back me up if I need it.

>

> If anyone can tell me how it has been for your child's school or where to

> find the information on what is required for nursing in the school system, I

> would appreciate it. Also, do you all agree with me that I should not be the

> only contact person for this issue? I have thought about this a lot and it

> just doesn't seem right to me.

>

>

> Mom to 3 yrs old on Feb. 17th!!!!!!! I can't believe we have made it

> to this point!!!!

>

>

>

> ---------------------------------

> Relax. Yahoo! Mail virus scanning helps detect nasty viruses!

>

>

[Guest guest]

Dylan goes to a state school that has its own student health center. The

nurses teach staff how to give the boluses, and once that staff member has

been signed off by the nurses, they can then give Dylan his bolus

unsupervised. Primarily it is done by his intervener, but we also have a

few other people trained in case she ever misses a day.

I am the only way who changes his button. I know the nurses in the SHC

could change it, and some years I leave one there just in case, but I have

never had it change it in 6 years of school and I prefer to do it myself.

When Dylan was in preschool they were far more concerned about the medical

issues.

Kim

> had her IEP for school and almost everything went well. It was 3 hours

> and we finished everything except for the nursing issues. She is going to

> attend the school for the deaf / hard of hearing and everyone agrees this is

> the best placement for her at this time. However, they do not have a nurse at

> that school and is tube fed.

>

> This is all new to us because we have just recently started bolus feeds to

> get her off of night feeds. She sees a nutritionist and the original plan was

> for her to get one can after lunch and one can after supper. We tried and that

> does not work. She starts dumping with just 4 ounces, so we started doing 6

> small bolus feeds and working up to what she can tolerate before she starts

> the dumping. We have managed to get her to 5 bolus and her stomach just won't

> take anymore in after that.

>

> The nurse from one of the other schools called me and said that they could

> not get someone there 3 times a day for her feedings and wanted me to put her

> on her pump when I send her to school and they would come take her off at

> lunch time. I refused because I know that she will not want to eat and the

> goal is to increase her oral intake to get her off the tube at some point. I

> also pointed out that would not like to be restricted to the pump and

> that she would pull the tube out frequently if we do that. They finally agreed

> that they could get someone there twice a day and we have worked her schedule

> out for that.

>

> Now, is going to start school on Tuesday and the nurse called me on

> Friday to tell me that they have her emergency medical plan written and would

> leave it at the school for me to look over and sign when she comes for her

> first day. I mentioned that I would have a button kit to be kept at school and

> asked where they would like it kept. The nurse then told me that they have me

> down as the only contact if the button should need replaced. I told her that I

> would need to go back to work at some point and I felt that they should be the

> first contact for this. She basically told me that they could not get there

> any faster than me to put it back in if they were busy with another student at

> another school.

>

> The way this came across to me was that her time is valuable and mines not.

> I also know that is smart enough to realize after just once that they

> will call me if the button comes out and then anytime she wants Mommy, she

> will pull it out. My thought is that they should be the ones called first and

> I should be the last resort for this. I also live 30 minutes from the school

> and if I am in the middle of something with one of my other kids, I am suppose

> to drop everything and this does not seem right to me. I can understand it if

> she is sick, but not for this.

>

> I plan to talk with them on Tuesday and try to work something out. I think

> that they are not seeing the big picture here. The nurses have not seen

> and were not at her IEP so I think that they think she can't really do much.

> They only see her on paper and have read the labels and assume the deafblind

> means the other end of the spectrum. I know that doctors have seen her on

> paper and are amazed when they see her and tell me that they did not expect

> her to be doing so much. I have tried to look for information on what the law

> states for nursing in the school system and I can't find anything. I want to

> talk to the nurses and see if we can work this out, but I also want to have

> the information on the law to back me up if I need it.

>

> If anyone can tell me how it has been for your child's school or where to

> find the information on what is required for nursing in the school system, I

> would appreciate it. Also, do you all agree with me that I should not be the

> only contact person for this issue? I have thought about this a lot and it

> just doesn't seem right to me.

>

>

> Mom to 3 yrs old on Feb. 17th!!!!!!! I can't believe we have made it

> to this point!!!!

>

>

>

> ---------------------------------

> Relax. Yahoo! Mail virus scanning helps detect nasty viruses!

>

>

[Guest guest]

I don't know - there are many kids who do not attend our deaf or vision

impaired preschools, because of complex medical needs. Basically they

decide an alternative placement is more appropriate, because of the nursing

care. Is a tricky line to walk - you want her in the best place and truly

how difficult is it to change a button or do a tube feeding? Once they get

to know her, they will all realize this is no big deal. in person

will charm them, where any of our kids on paper seem to terrify people.

Kim

> My son is tube feed and trached. It is a LIABILITY for

> the school system NOT to provide him with a nurse. She

> rides the bus with him and gives him his meds during

> the day. There is another little girl who is tube fed

> and she was put in the same class as because

> there was a nurse. The nurse can not put in a feeding

> button if it comes out but she can put in a foley to

> keep it open and then when he gets home I can put the

> button back in. I would stress that it is a liability

> for them not to provied a nurse there to help her. I

> would look at 's Law for the laws pertaining to

> this issue. She has a right to a safe environment to

> go to school and if that means she needs a nurse

> present then they need to provide that for her. If

> they refuse I would look into the disability law

> center in your state. Sorry this is long winded but I

> feel strongly in providing nursing care if it is

> needed. It is not fair to her or you if you have to

> keep coming in to the school to replace her button or

> to feed her that is just wrong. That would be like not

> feeding a kid with low bloodsugar just because it was

> not lunchtime.

> a

>

> --- Lee wrote:

>

>> had her IEP for school and almost everything

>> went well. It was 3 hours and we finished everything

>> except for the nursing issues. She is going to

>> attend the school for the deaf / hard of hearing and

>> everyone agrees this is the best placement for her

>> at this time. However, they do not have a nurse at

>> that school and is tube fed.

>>

>> This is all new to us because we have just

>> recently started bolus feeds to get her off of night

>> feeds. She sees a nutritionist and the original plan

>> was for her to get one can after lunch and one can

>> after supper. We tried and that does not work. She

>> starts dumping with just 4 ounces, so we started

>> doing 6 small bolus feeds and working up to what she

>> can tolerate before she starts the dumping. We have

>> managed to get her to 5 bolus and her stomach just

>> won't take anymore in after that.

>>

>> The nurse from one of the other schools called me

>> and said that they could not get someone there 3

>> times a day for her feedings and wanted me to put

>> her on her pump when I send her to school and they

>> would come take her off at lunch time. I refused

>> because I know that she will not want to eat and the

>> goal is to increase her oral intake to get her off

>> the tube at some point. I also pointed out that

>> would not like to be restricted to the pump

>> and that she would pull the tube out frequently if

>> we do that. They finally agreed that they could get

>> someone there twice a day and we have worked her

>> schedule out for that.

>>

>> Now, is going to start school on Tuesday

>> and the nurse called me on Friday to tell me that

>> they have her emergency medical plan written and

>> would leave it at the school for me to look over and

>> sign when she comes for her first day. I mentioned

>> that I would have a button kit to be kept at school

>> and asked where they would like it kept. The nurse

>> then told me that they have me down as the only

>> contact if the button should need replaced. I told

>> her that I would need to go back to work at some

>> point and I felt that they should be the first

>> contact for this. She basically told me that they

>> could not get there any faster than me to put it

>> back in if they were busy with another student at

>> another school.

>>

>> The way this came across to me was that her time

>> is valuable and mines not. I also know that

>> is smart enough to realize after just once that they

>> will call me if the button comes out and then

>> anytime she wants Mommy, she will pull it out. My

>> thought is that they should be the ones called first

>> and I should be the last resort for this. I also

>> live 30 minutes from the school and if I am in the

>> middle of something with one of my other kids, I am

>> suppose to drop everything and this does not seem

>> right to me. I can understand it if she is sick, but

>> not for this.

>>

>> I plan to talk with them on Tuesday and try to

>> work something out. I think that they are not seeing

>> the big picture here. The nurses have not seen

>> and were not at her IEP so I think that they

>> think she can't really do much. They only see her on

>> paper and have read the labels and assume the

>> deafblind means the other end of the spectrum. I

>> know that doctors have seen her on paper and are

>> amazed when they see her and tell me that they did

>> not expect her to be doing so much. I have tried to

>> look for information on what the law states for

>> nursing in the school system and I can't find

>> anything. I want to talk to the nurses and see if we

>> can work this out, but I also want to have the

>> information on the law to back me up if I need it.

>>

>> If anyone can tell me how it has been for your

>> child's school or where to find the information on

>> what is required for nursing in the school system, I

>> would appreciate it. Also, do you all agree with me

>> that I should not be the only contact person for

>> this issue? I have thought about this a lot and it

>> just doesn't seem right to me.

>>

>>

>> Mom to 3 yrs old on Feb. 17th!!!!!!! I

>> can't believe we have made it to this point!!!!

>>

>>

>>

>> ---------------------------------

>> Relax. Yahoo! Mail virus scanning helps detect nasty

>> viruses!

>>

>> [Non-text portions of this message have been

>> removed]

>>

>>

>

>

> __________________________________________________

>

[Guest guest]

I don't know - there are many kids who do not attend our deaf or vision

impaired preschools, because of complex medical needs. Basically they

decide an alternative placement is more appropriate, because of the nursing

care. Is a tricky line to walk - you want her in the best place and truly

how difficult is it to change a button or do a tube feeding? Once they get

to know her, they will all realize this is no big deal. in person

will charm them, where any of our kids on paper seem to terrify people.

Kim

> My son is tube feed and trached. It is a LIABILITY for

> the school system NOT to provide him with a nurse. She

> rides the bus with him and gives him his meds during

> the day. There is another little girl who is tube fed

> and she was put in the same class as because

> there was a nurse. The nurse can not put in a feeding

> button if it comes out but she can put in a foley to

> keep it open and then when he gets home I can put the

> button back in. I would stress that it is a liability

> for them not to provied a nurse there to help her. I

> would look at 's Law for the laws pertaining to

> this issue. She has a right to a safe environment to

> go to school and if that means she needs a nurse

> present then they need to provide that for her. If

> they refuse I would look into the disability law

> center in your state. Sorry this is long winded but I

> feel strongly in providing nursing care if it is

> needed. It is not fair to her or you if you have to

> keep coming in to the school to replace her button or

> to feed her that is just wrong. That would be like not

> feeding a kid with low bloodsugar just because it was

> not lunchtime.

> a

>

> --- Lee wrote:

>

>> had her IEP for school and almost everything

>> went well. It was 3 hours and we finished everything

>> except for the nursing issues. She is going to

>> attend the school for the deaf / hard of hearing and

>> everyone agrees this is the best placement for her

>> at this time. However, they do not have a nurse at

>> that school and is tube fed.

>>

>> This is all new to us because we have just

>> recently started bolus feeds to get her off of night

>> feeds. She sees a nutritionist and the original plan

>> was for her to get one can after lunch and one can

>> after supper. We tried and that does not work. She

>> starts dumping with just 4 ounces, so we started

>> doing 6 small bolus feeds and working up to what she

>> can tolerate before she starts the dumping. We have

>> managed to get her to 5 bolus and her stomach just

>> won't take anymore in after that.

>>

>> The nurse from one of the other schools called me

>> and said that they could not get someone there 3

>> times a day for her feedings and wanted me to put

>> her on her pump when I send her to school and they

>> would come take her off at lunch time. I refused

>> because I know that she will not want to eat and the

>> goal is to increase her oral intake to get her off

>> the tube at some point. I also pointed out that

>> would not like to be restricted to the pump

>> and that she would pull the tube out frequently if

>> we do that. They finally agreed that they could get

>> someone there twice a day and we have worked her

>> schedule out for that.

>>

>> Now, is going to start school on Tuesday

>> and the nurse called me on Friday to tell me that

>> they have her emergency medical plan written and

>> would leave it at the school for me to look over and

>> sign when she comes for her first day. I mentioned

>> that I would have a button kit to be kept at school

>> and asked where they would like it kept. The nurse

>> then told me that they have me down as the only

>> contact if the button should need replaced. I told

>> her that I would need to go back to work at some

>> point and I felt that they should be the first

>> contact for this. She basically told me that they

>> could not get there any faster than me to put it

>> back in if they were busy with another student at

>> another school.

>>

>> The way this came across to me was that her time

>> is valuable and mines not. I also know that

>> is smart enough to realize after just once that they

>> will call me if the button comes out and then

>> anytime she wants Mommy, she will pull it out. My

>> thought is that they should be the ones called first

>> and I should be the last resort for this. I also

>> live 30 minutes from the school and if I am in the

>> middle of something with one of my other kids, I am

>> suppose to drop everything and this does not seem

>> right to me. I can understand it if she is sick, but

>> not for this.

>>

>> I plan to talk with them on Tuesday and try to

>> work something out. I think that they are not seeing

>> the big picture here. The nurses have not seen

>> and were not at her IEP so I think that they

>> think she can't really do much. They only see her on

>> paper and have read the labels and assume the

>> deafblind means the other end of the spectrum. I

>> know that doctors have seen her on paper and are

>> amazed when they see her and tell me that they did

>> not expect her to be doing so much. I have tried to

>> look for information on what the law states for

>> nursing in the school system and I can't find

>> anything. I want to talk to the nurses and see if we

>> can work this out, but I also want to have the

>> information on the law to back me up if I need it.

>>

>> If anyone can tell me how it has been for your

>> child's school or where to find the information on

>> what is required for nursing in the school system, I

>> would appreciate it. Also, do you all agree with me

>> that I should not be the only contact person for

>> this issue? I have thought about this a lot and it

>> just doesn't seem right to me.

>>

>>

>> Mom to 3 yrs old on Feb. 17th!!!!!!! I

>> can't believe we have made it to this point!!!!

>>

>>

>>

>> ---------------------------------

>> Relax. Yahoo! Mail virus scanning helps detect nasty

>> viruses!

>>

>> [Non-text portions of this message have been

>> removed]

>>

>>

>

>

> __________________________________________________

>

[Guest guest]

I don't know - there are many kids who do not attend our deaf or vision

impaired preschools, because of complex medical needs. Basically they

decide an alternative placement is more appropriate, because of the nursing

care. Is a tricky line to walk - you want her in the best place and truly

how difficult is it to change a button or do a tube feeding? Once they get

to know her, they will all realize this is no big deal. in person

will charm them, where any of our kids on paper seem to terrify people.

Kim

> My son is tube feed and trached. It is a LIABILITY for

> the school system NOT to provide him with a nurse. She

> rides the bus with him and gives him his meds during

> the day. There is another little girl who is tube fed

> and she was put in the same class as because

> there was a nurse. The nurse can not put in a feeding

> button if it comes out but she can put in a foley to

> keep it open and then when he gets home I can put the

> button back in. I would stress that it is a liability

> for them not to provied a nurse there to help her. I

> would look at 's Law for the laws pertaining to

> this issue. She has a right to a safe environment to

> go to school and if that means she needs a nurse

> present then they need to provide that for her. If

> they refuse I would look into the disability law

> center in your state. Sorry this is long winded but I

> feel strongly in providing nursing care if it is

> needed. It is not fair to her or you if you have to

> keep coming in to the school to replace her button or

> to feed her that is just wrong. That would be like not

> feeding a kid with low bloodsugar just because it was

> not lunchtime.

> a

>

> --- Lee wrote:

>

>> had her IEP for school and almost everything

>> went well. It was 3 hours and we finished everything

>> except for the nursing issues. She is going to

>> attend the school for the deaf / hard of hearing and

>> everyone agrees this is the best placement for her

>> at this time. However, they do not have a nurse at

>> that school and is tube fed.

>>

>> This is all new to us because we have just

>> recently started bolus feeds to get her off of night

>> feeds. She sees a nutritionist and the original plan

>> was for her to get one can after lunch and one can

>> after supper. We tried and that does not work. She

>> starts dumping with just 4 ounces, so we started

>> doing 6 small bolus feeds and working up to what she

>> can tolerate before she starts the dumping. We have

>> managed to get her to 5 bolus and her stomach just

>> won't take anymore in after that.

>>

>> The nurse from one of the other schools called me

>> and said that they could not get someone there 3

>> times a day for her feedings and wanted me to put

>> her on her pump when I send her to school and they

>> would come take her off at lunch time. I refused

>> because I know that she will not want to eat and the

>> goal is to increase her oral intake to get her off

>> the tube at some point. I also pointed out that

>> would not like to be restricted to the pump

>> and that she would pull the tube out frequently if

>> we do that. They finally agreed that they could get

>> someone there twice a day and we have worked her

>> schedule out for that.

>>

>> Now, is going to start school on Tuesday

>> and the nurse called me on Friday to tell me that

>> they have her emergency medical plan written and

>> would leave it at the school for me to look over and

>> sign when she comes for her first day. I mentioned

>> that I would have a button kit to be kept at school

>> and asked where they would like it kept. The nurse

>> then told me that they have me down as the only

>> contact if the button should need replaced. I told

>> her that I would need to go back to work at some

>> point and I felt that they should be the first

>> contact for this. She basically told me that they

>> could not get there any faster than me to put it

>> back in if they were busy with another student at

>> another school.

>>

>> The way this came across to me was that her time

>> is valuable and mines not. I also know that

>> is smart enough to realize after just once that they

>> will call me if the button comes out and then

>> anytime she wants Mommy, she will pull it out. My

>> thought is that they should be the ones called first

>> and I should be the last resort for this. I also

>> live 30 minutes from the school and if I am in the

>> middle of something with one of my other kids, I am

>> suppose to drop everything and this does not seem

>> right to me. I can understand it if she is sick, but

>> not for this.

>>

>> I plan to talk with them on Tuesday and try to

>> work something out. I think that they are not seeing

>> the big picture here. The nurses have not seen

>> and were not at her IEP so I think that they

>> think she can't really do much. They only see her on

>> paper and have read the labels and assume the

>> deafblind means the other end of the spectrum. I

>> know that doctors have seen her on paper and are

>> amazed when they see her and tell me that they did

>> not expect her to be doing so much. I have tried to

>> look for information on what the law states for

>> nursing in the school system and I can't find

>> anything. I want to talk to the nurses and see if we

>> can work this out, but I also want to have the

>> information on the law to back me up if I need it.

>>

>> If anyone can tell me how it has been for your

>> child's school or where to find the information on

>> what is required for nursing in the school system, I

>> would appreciate it. Also, do you all agree with me

>> that I should not be the only contact person for

>> this issue? I have thought about this a lot and it

>> just doesn't seem right to me.

>>

>>

>> Mom to 3 yrs old on Feb. 17th!!!!!!! I

>> can't believe we have made it to this point!!!!

>>

>>

>>

>> ---------------------------------

>> Relax. Yahoo! Mail virus scanning helps detect nasty

>> viruses!

>>

>> [Non-text portions of this message have been

>> removed]

>>

>>

>

>

> __________________________________________________

>

[Guest guest]

- It is partly an issue of the Nurse Practice Act which determines what

nurses do - then it comes down to districts and their interpretation of it.

kim

> ,

> Just curious - why does it have to be a nurse to do the tube feedings? I'm

> just curious because here the TA's do it (teacher's assistants). There aren't

> any nurses in our schools. I work with a little fellow that needs tube feeds

> and suctioning and I do it all myself. Is it a US thing? Is there someone

> else that can do it so as not to compromise the feeding plan? I wouldn't have

> the school telling me how to feed my child - " I " set what her feeding times,

> etc are - THEY can accommodate.

> Let me know how it goes.

>

>

>

>

> Weir

> Home: lisaweir@...

> Work: lisa.weir@...

> Phone:

> Web: http://ca.geocities.com/weirfamilyrogers

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

- It is partly an issue of the Nurse Practice Act which determines what

nurses do - then it comes down to districts and their interpretation of it.

kim

> ,

> Just curious - why does it have to be a nurse to do the tube feedings? I'm

> just curious because here the TA's do it (teacher's assistants). There aren't

> any nurses in our schools. I work with a little fellow that needs tube feeds

> and suctioning and I do it all myself. Is it a US thing? Is there someone

> else that can do it so as not to compromise the feeding plan? I wouldn't have

> the school telling me how to feed my child - " I " set what her feeding times,

> etc are - THEY can accommodate.

> Let me know how it goes.

>

>

>

>

> Weir

> Home: lisaweir@...

> Work: lisa.weir@...

> Phone:

> Web: http://ca.geocities.com/weirfamilyrogers

>

>

>

>

>

>

>

>

>

>

>