I think I've mentioned recently the stress of preparing to send a child with medical issues to school. Last fall when Raya first started preschool, I thought my head was going to explode. I did the best I could to prepare for her first IEP meeting and explained as thoroughly as I possibly could to her teacher & the school health aide what Raya's main medical concerns were, how to operate the feeding pump, and what to do in case of a G tube-related emergency. I prepared the very best I could, and overall things went pretty well but there were still some frustrating moments throughout the year.
This year, the preschool program has moved to a brand new (and HUGE) facility inside the new middle school (which sounded completely unappealing to me but turned out okay) and we have a new teacher and a new health aide. I really wanted to get off on the right foot this year, so I prepared a little differently and probably even a little better than I did last year. Perhaps enough to make all the school employees think I'm an obsessive helicopter parent, but I'm at a point in my life where I'm totally okay with that as long as it keeps anybody from screwing anything up while she's not on my watch.
I thought I would share how we are handling things this year, and maybe it will give someone else ideas to adapt for their own situation. Here are some things we have done or will be doing:
Meet with the teacher ahead of time
This year, we met with Raya's teacher the Wednesday before school started. That was the official meet-the-teacher day, but I emailed her ahead of time and requested a private meeting earlier in the day so that we would have more time to go over everything. It went really well. We talked about the main items on our list of concerns, which are food allergies, food cross-contamination, her sometimes disruptive & unruly feeding pump, G tube emergencies, keeping her hydrated, and doing the best we can to keep her healthy. We gave her a copy of the medical history I typed up to provide to the district and a copy of the Infinity pump troubleshooting guide I made (that I now realize needs to be re-done for school nurse/respite provider purposes). (more about those things later...)
Meet with the school nurse ahead of time
Equally as important as meeting with the teacher! The school nurse (or health aide, since some aren't nurses) needs to be familiar enough with the child's needs that he or she can handle whatever comes up. That includes feeding pump alarms. One of my Feeding Tube Awareness colleagues is working on a very simplified basic pump operation guide that will be PERFECT for school nurses, but until then, all I had to give them was the abbreviated, snark-free version of my Moog Infinity troubleshooting blog post. I'll add the other document as soon as it's available.
Ask the teacher questions
The first time around is always a learning experience for me, no matter how much I try to prepare myself. Last year when I met with the teacher & health aide before Raya started school, I went into it feeling like I was the one that needed to do all the explaining and then answer their questions. That is definitely an important part of the process, but one thing that I did this time that I didn't do last year was ask the teacher how familiar she was with G tubes. I don't know why it didn't occur to me to do that last year. Maybe because we knew there was a little friend of ours in the class that used to have a tube so we knew the teacher had at least some exposure. This teacher said that she really wasn't familiar with them at all, and that gave me a better idea of how much information I needed to give her. I was actually a little bit relieved that she is not familiar with G tubes because that meant that she had no assumptions about caring for Raya based on experiences with previous students with tubes. Other questions that we asked were things like whether or not the kids use soap & water to wash hands before and after snacks, and emphasized that hand sanitizer will not protect a child with food allergies from cross contamination. Asking questions is something that I'm not very good at but made a real effort to come up with questions this time. The result was a very informative discussion on both sides of the table and we felt good when we left.
Update medical information already on file
If your child is returning to school and already has health information on file with the school, now is a great time to provide an updated version to the school. I had typed a medical history summary last year to give to the teacher and the health aide, as well as the district so it could be filed with her IEP. That made it pretty easy for me to update. All I had to do was open the document, go over everything from last year, and update whatever has changed since then. It was also nice to read through it and see the areas that Raya has made progress in since November. I typed the list in a similar format to this blog post, and put the different topics in order of medical priority, with the food allergy stuff on top.
Know & agree upon G tube emergency procedures
Our school district has a "no replacement" policy for all feeding tubes, meaning that if it comes out at school, no district employee is allowed to even attempt to put it back in, nor can they put anything else (like a Foley catheter) in its place to keep the stoma open. Admittedly, I was angry, frustrated, scared, and really annoyed when I found out about it. It was the one thing in the IEP meeting that almost filled my eyes with tears, probably because her tube had gotten pulled out no less than 3 times that week. The district's health supervisor was on speaker phone because she had not come to the meeting like I had requested, and her answer to my question of how an accidental pull-out is handled was, "Well, typically we'd call the parent first and if the parent can't come or we can't get a hold of them within 30 minutes, we call 911 and send the child to the hospital in an ambulance. Either that or some parents just have us cover the stoma with gauze and they'll take care of it when the child gets home from school at the end of the day." *pauses to clear throat* Right. I may have actually let out a small laugh because I don't know a single tubie parent that would EVER agree to that, and I know a whole lotta' tubie parents! It became clear right away that trying to fight the policy was futile, but I certainly could not agree to EITHER of their suggested emergency procedures, so we came up with a compromise at my request. Here is our emergency procedure:
In case of accidental G tube dislodgement:
1. Call mom immediately and cover stoma
2. Bring Raya to health office to wait for help (turn off the feeding pump if it's running)
3. If unable to reach mom within 10 minutes, the following individuals are authorized to place the G tube or a Foley catheter:
(list of 4 local friends)
It doesn't sound like much when it's written that way but it's something I'm comfortable with as opposed to what the district suggested. We are very, very blessed to have friends close by who are parents of kiddos with feeding tubes, and are willing to at least try to get Raya's tube back in if I can't get there in time. If any of our family members were close enough, or even friends with no tube experience that would be willing to learn and at least try, that would be better than having everybody's hands tied until I could get there. (The reason Donny isn't mentioned in the emergency plan is that he works 45 minutes away, so that is really not a viable option.)
In addition to our emergency plan, I also specifically noted that Raya is not to be sent to the hospital in an ambulance because of a G tube pull-out. Ever. As I explained to the two people I met with from the district (and to a group of wide-eyed people at the IEP meeting last fall), if the tube comes out and is out long enough for the stoma to start to close, it will require a painful and traumatic dilation in the ER (or preferably OR under sedation, but that's pretty unlikely). If Raya ever gets to the point of needing a dilation, the worst possible thing they could do would be to send her to the hospital with whatever school employee would end up escorting her and have the procedure done without either of her parents there. And that's only IF the ER staff knew what to do and COULD do it without one of us there. It really would be an unnecessary expense to send her by ambulance.
Another thing that is in the district's policy is that no school employees are allowed to forcibly flush a tube, which includes attempting to unclog a clogged tube. As of yet, the only clogged tube we have ever had was the NG that I put Prevacid solutabs in without thinking it through first. I'm not terribly concerned about running into problems with a clogged tube but if it was something that we had recurring problems with or if Raya was on continuous feeds, that would be something we would address in the emergency plan as well. As it stands, all they would do is call me to let me know that the tube was clogged and I would either come and fix it or have them turn off the pump and deal with it when she gets home.
Prepare emergency kit & extra supplies
Over the weekend before school started, I had massive amounts of paperwork to fill out and emergency/supply kits to prepare. I wanted to make sure that the school has everything that they might possibly need in the cabinet in the nurse's office. Here's what I provided:
Emergency G tube kit:Even though the district has a no replacement policy for G tubes, part of our agreement (and part of her GI doctor's orders) are that they are required to keep an emergency G tube kit in the nurse's office. That way, if I get "the call" while I'm out of the house & don't have supplies with me or if one of our wonderful volunteers needs to come to the school, everything they need will be there. In this kit, we have a supply list & instruction card, a gently used MicKey button (in case her AMT Mini One breaks or won't go in), empty 6ml luer slip syringe (to remove water from balloon if it's still inflated), 10ml syringe of KY Jelly, 10ml luer slip syringe with 5ml of water in it for the balloon, gauze to put around the tube after it's in, a Q tip with the cotton pulled off one end (to use as a stiffener for the AMT Mini One since it's harder to get in), a roll of paper tape, and some gauze pads (without holes in the middle) that the school put in the kit last year to cover the stoma with while they wait for someone to come. The only thing I didn't include in the picture is the pair of nitrile gloves (because who wants to touch another person's kid's stomach goo). I also meant to put in a Foley catheter and will probably go back to the nurse's office sometime soon and add that. I put all of it in a plastic pencil box and it's kept on a shelf in the nurse's office.
One thing that I included was an instruction card, just because sometimes people need something to look at in a stressful situation to make sure they're not missing any steps.
Spare Parts Kit:Accidents happen, things break or get peeled off, and kids get dehydrated & need water boluses, so that's what the spare parts kit is for. The extension set is a spare just in case the one she's being fed with at school breaks or is somehow rendered useless. It could also be used for meds if the one that I have in the medicine kit breaks or is somehow rendered useless. :) The syringes can be used to flush her tube or give her a water bolus, and the Hypafix is the only kind of tape we've found that holds well enough to keep her extension taped to her belly. Everything else falls off too easily or irritates her skin. Not having it taped is kind of asking for the tube to get pulled out, so I figured they might as well have a roll of Hypafix in the cabinet too. All of these things are in a plastic baggie with her name on it.
Medicine Kit:In this baggie, we have a bottle of Benadryl because of her multiple food allergies, a 10ml syringe to administer the Benadryl (or Tylenol) with, a 35ml cath tip syringe to flush the medicine through with, and an extension tube with a med port to give meds with since we rarely ever feed with a Y port extension tube anymore. (The school already has liquid Tylenol in the nurse's office so I didn't supply any. With her only being there for 3 hours at a time, if she ever needs Tylenol I will just give it to her before school.) I also included a card with detailed instructions for how to give Raya Benadryl or Tylenol. It's something that I take for granted as second nature, but I realized that someone who is unfamiliar with giving meds through a G tube might not remember to pause the feed, know how to disconnect the straight port extension and connect the Y port extension, unclamp the extension before pushing the medicine, or might not know they need to prime the extension with water before connecting it & giving meds or know how much water to flush with afterward. This way, there is very little room for error. Even if the regular school nurse knows how to do it all, there's always a chance that she could be gone on a day that Raya ends up needing something, so the instruction card is a very good idea and needs to be specific to each individual child.
The other thing that is not pictured here is the 2 pack of EpiPens. Raya is allergic to peanuts and all tree nuts, so it is an absolute must that she has them at school. If you have seen the news recently, you have probably heard about the young teenage girl who died of anaphylactic shock after biting into something that had peanut butter in it even after her father (a doctor) injected her with 3 EpiPens. Severe food allergies are SCARY and should be respected, and anyone caring for a person with food allergies should make the effort to learn about and understand that person's allergies and be prepared for an emergency. *steps off soapbox* So we have the Benadryl as a first line of defense and the EpiPens as the next, as well as an anaphylaxis plan signed by the allergist, which brings me to...
Oh, the paperwork. If you have a child with a feeding tube who is old enough to go to school, there are certain things that you need to have on file with the school. There are 3 different documents that can be used to help a child have his or her medical needs met while in school: Individual Health Plan (IHP), a 504 Plan, and an Individualized Education Plan (IEP). The Oley Foundation posted an excellent article that explains all of these things in great detail and how they work to protect the child's health care needs at school. Some kids will only need one or another, and some will need more than one. Rather than try to explain things myself, I will just strongly encourage everyone who has a child with any kind of medical issue that could impact school to read this article on Oley's website by Donna Noble: IHPs, 504 Plans, and IEPs: What’s the Difference? READ IT!! It will answer a lot of questions and help you determine which plan would best serve your child. The Feeding Tube Awareness Foundation also has information on their website about dealing with tube feeding in school, as does Complex Child E-Magazine.
In addition to Raya's IEP that is already on file with the district, we had the Anaphylaxis Emergency Action Plan that had to be filled out and signed by the allergist, a form titled Primary Care Provider Authorization: Gastrostomy Tube Feeding (2 sided), another form titled Physician's Authorization for Medical Procedure at School, the Individualized Care Plan with our emergency protocol for pull-outs, and the emergency contact card that they require all the students in the entire district to fill out that also includes allergy information. All but the Individualized Care Plan and the emergency contact card had to be signed off on by the GI doctor before I could return them to the school.
The G tube feeding form has the information about Raya's pump settings, the type of tube she has, the formula she's on, her feed schedule, and the school's policy on emergencies, including the part where I wrote in that they can't transport her by ambulance for a G tube pull-out without me or Donny there.
The medical procedure authorization form authorizes the GI office and the school to exchange pertinent information about Raya. It also includes things like the diagnosis that necessitates medical procedures being done at school, the procedure & equipment needed, the time schedule, emergency procedures, concerns about transporting her on the bus, physical activity restrictions, length of day she can tolerate, risk factors for Raya coming to school, and any changes in condition that are anticipated during the year.
Some of the information on these forms seems a little redundant and there's a part of me that feels like the information is going to get put in a filing cabinet somewhere and never be seen again. I have to say though that meeting with the school nurse & the other guy from the district last week made me feel like we were putting a face with the paperwork for them. Even before school started this year, I felt like there was a huge difference in the level of concern for Raya's health & safety and I really don't think we will have the same problems we had last year. There are bound to be snags (like finding out today that they're moving Raya to a new class on Monday with a different teacher who has not been formally briefed on ANY of this stuff yet...) BUT the school nurse has been very involved already this week and has gone out of her way to make me feel like the school cares about Raya's well-being. That means a lot to an obsessive helicopter parent. :) She even called me while I was getting my teeth cleaned today to tell me that the pump kept beeping but she got it figured out & everything was fine. :)
Raya's IEP is supposed to include things like that she is not allowed to have any food that is not provided by her parents, precautions should be taken to keep her from eating other kids' food, the school is to notify us of any ingestion (or suspected ingestion) of anything she's known to be allergic to or that she did not bring from home, and other information about her tube feeds at school. She's not due for an IEP meeting until November, at which point I will be verifying that the health information that I provided to the district has been added to the IEP like it's supposed to be and if it is not, then I will not be leaving the meeting until it is.
So there you have it, that's our back-to-school preparation! I hope it helps someone!