Feeding tube replacement in IEP

[Ashley]

Hello! 

This will be a little long, but it needs the backstory to make sense as to what I am needing.

My 4yo attends a preK program for disabled children at our local school district (we live in Texas). He has two separate feeding tubes (a G and a surgical J). At school, he uses the G for water boluses and the J for a continuous feed that is started at school by the nurse. Last week, on Monday I got a call that his J tube had come out and I needed to come put it back in. No big deal, that is what I told the nurse to do if it ever were to come out. I got to the school within 10 mins of the call and when I went to put the tube in, the stoma was already closed. He ended up having to be admitted to the hospital and having surgery to get it replaced and that experience was traumatic for him. Now his stoma is really sore and he will not let anybody hook up a feed to his button so that is another issue. Having to spend a few days in the hospital when his tube comes out is not ideal for a lot of reasons. 

I asked the nurse if she was allowed to replace the button and she said she needed orders from GI. No problem I can get those. A little while later she let me know that there is a new rule from the state board of nursing that prohibits school nurses from being allowed to replace feeding tubes unless the district gets them special training/certification. So that leads me to here asking how do I go about "requiring" the school to pay for this training for the nurse? Apparently my kiddo's stoma closes really fast and he does not need to be hospitalized if it comes out again, that is unfair to him and the family unit. In my opinion, if it comes out at school again and the stoma closes and he is hospitalized again, that means he is missing out on his education, even if it is 'just' preK. 

So I guess my questions are, 1- is this even an appropriate ask or am I stretching too far? 2- how do I go about wording it during the ARD meeting? Right now, I am still really upset with everything so my thoughts aren't formed 100% so I need help making sure I say the right things. 3- What do I do if they give pushback? What are my options if they don't want to pay for the nurse to get certified? 

 

Thanks! 

[Jenna]

I'm sorry your little one had to be admitted to the hospital and your family has all the stress that goes with that. Have you asked the school nurse for a link to the rule regarding school nurses not being allowed to replace feeding tubes unless the district gets them special training/certification, along with what specific training/certification is required? Does your GI doctor's office have info on what training the school may need, or resources on where the nurse could get trained?

It's absolutely within your rights to ask these questions as your child needs to be properly fed/hydrated in order to access their educational environment.

[Lisa Lightner]

My son has a gtube, and he requires sedation for all the changes. That means quarterly hospital visits, so I feel your struggles.

First, I would make sure that what she is telling you is true. Not accusing her of being a liar, but misinformation abounds in this world. Most state agencies like that have a help line or 800 number to call, and they should be able to answer your question.

It is not at all unusual for a state to strictly regulate who can do these various things, and under what circumstances.

I would ask for an IEP meeting to discuss, and it may not require convening the entire team. The LEA and school nurse should be enough. In writing and in person, tell them what you told us, and together come up with solutions.

In my mind, getting the nurse the training is likely the easiest and most cost effective solution. When you call the agency, I would also ask them when/where such training is being offered, or call your GI or the surgeon's office who does this for your child, and ask if they offer it.