Re: Maddison T. g-tube

[Guest guest]

> Hi ,

I have a 12 year old son who has had a g-tube his whole life, and

thus, requires feedings in school. For the past year, he has been

wearing a feeding pump & backpack, which he takes care of himself.

Prior to that (from pre-school to beginning of 5th grade), he had

bolus feedings at school. He had 2 bolus feedings at school through

4th grade & then went to one a day in 5th grade. He always had a

nurse do his feedings. He went to a special preschool in which there

were a lot of children with medical needs. However, he attended a

regular elementary school & is now in a regular middle school. A

tube feeding in which a child does not have complications does not

require a nurse. Each school district probably has their own way of

handling needs such as this though. We happen to live in the 5th

largest school system in the U.S. (270,000+ students in my county).

When started kindergarten, there were no nurses in the

elementary schools. There still aren't unless they are assigned to

specific kids. The school initially hired a unique aide (a

paraprofessional) to take care of 's tube feeding and other

needs. I trained her & a few backup staff to bolus feed in

conjunction with the school's health services department. ,

however, had some pretty severe complications when it came to his

feedings. The first time had a problem, the school wanted to

call 911 until I assured them that would be ok. From that

point on, the staff at the school were very nervous in feeding

, and even though I knew he was " ok " , I could understand how

they would be nervous. So, the school initiated the process to get a

nurse for within his first week of kindergarten. We had a

hard battle at the time, because the only schools which had nurses

were centers for mentally handicapped students. , of course,

did not meet criteria for a school like this. So, after fighting

with the school district (who I also work for by the way),

got his own nurse. He was the first kid in the school district to

have a nurse in a regular school. She stayed at the school just for

him from kindergarten to 4th grade. Then, in 5th grade, she only

came at his feeding time. He no longer has a nurse in middle

school. In addition to bolus feedings, the nurse was responsible for

oral feeding therapy (snack & lunch), and still had a unique

aide as well. Depending on what kind of complications Maddison has

with her feeding (if any), you can decide what kind of person is best

qualified to take care of her needs. If you think a nurse is

necessary, then you should push for it, but you are likely to

encounter some resistance, as a nurse is expensive for the school to

pay for. If Maddison tolerates her feedings just fine, then a

trained paraprofessional might work. If she will be wearing her

feeding pump and has no complications, she probably won't need a

special person just for her, but you can train her teacher or any

other school staff in how to operate the pump. Hope this info helped

& good luck!

Kim C.

> Hi everyone,

> This is Maddison Tolbert's mom from Georgia. The last time I posted

> I was in a delima about Maddison needing a feeding tube placed at 4

> years old. Well we saw the gastro. and he said she needed it

> because she wasn't even on the charts for weight. She is 4 1/2 and

> 38 inches and 24 lbs. So we did the surgery Tues 11/22. We are home

> from the hospital and doing pretty good. My question is the doctor

> sent us home on five times a day feeds of 4 onces. This means she

> will have to have 2 feeds at school. Anyone else do feeds at

> school? I know they have to do it but when we talked with the

> school last I was under the impression that she would just be

> getting the feeds at night and not at school so that is what I told

> them. How do I go about telling them she will have to have 2 feeds

> at school and who do I see first, (principal, lady that does the

> IEP's etc.)? Will a para pro/teacher aide do the feed or a nurse?

> And where do they do them, not in the office I hope. I don't want

> her to go out of class to have it done all the time. It is probably

> going to work out where she has one at the very beginning of lunch

> and the other at their afternoon snack. We have a pump and gravity

> feed thing. I assume she will take a back pack and the pump to

> school and wear it during the feeds? Is this what anyone else

> does. Any input will help please.

>

> Tolbert

> Mom to Maddison 4 1/2 24lbs (for now), 38 inches gh, periactin,

> zantac,

>

>