Ok, so the point of me writing this is not to get anyone in trouble but to share with you all what is going on, in as much detail as I can! I will not share the school district or school that Logan attends (if you know, that’s fine) as I am not looking to get anyone in trouble or call anyone out, I respect laws and those that have licenses. However, what I am trying to do is get my child fed properly based on his nutritionist’s guidance and doctors’ script. No law, license or regulation should trump my childs nutritional needs!
When Logan started school back in September, we had to have the doctor script rewritten numerous times to fit the school nurse’s needs. At the time Logan was getting fed five times a day (every three hours). We eventually got the script written and everything was going well. Fast forward to mid-October and it was brought to our attention that Logan was missing one-hour of school per day, equally a full day of school missed per week because he was getting fed twice a day at school (approx. 30 minutes each feed). This was eye-opening and very important for us to come up with a solution. After working with Logan’s nutritionist’s and doctors to come up with a solution, we were able to switch Logan to four feeds a day (every four hours). The new regimen was going well, even when a new school nurse started. We had been mixing Logan’s formula at home and sending it in a bottle for his school feed. The doctor script was written specifically to accommodate for this feed.
Fast forward to January, when another new school nurse started. She fed Logan Monday and Tuesday, called me into the office on Wednesday stating she was uncomfortable feeding Logan from the bottle I send, that she needs to see the label. Where I responded, that’s not possible the way the mix is done. We continued to go back and forth trying to figure out how everyone would be happy and left it as we would do some digging to find a reasonable solution. She then called in sick on Thursday and quit on Friday (via text). Leaving us to deal with this “law” she brought to everyone’s attention.
The worst part is, Logan’s new LPN has no problem feeding him the pre-mix that we send in a bottle but because this has been brought to the schools’ attention and the district, they aren’t allowing it, hence the fight!
Based on this “law,” (and I use law in quotes because it’s not clearly defined), the school nurse has to administer tube fed formula from a container with a label. We wouldn’t have a problem with this if Logan got fed from a single package per feed. The problem is that we make Logan’s formula the night before for the next day’s four feeds. It consists of three – 300ml packages of Compleat, one – 1.5 oz Benecalorie and 200ml water. This then gets split into four – 270ml feeds for the next day. If his formula came in individual servings with labels, I would have no problem having the nurse feed from a labeled package. But this is not possible.
They tried suggesting that the nurse make his four feeds for the day and send the rest home. Well…why is the nurse more competent to make his feed than the parent? Not to mention, I cannot guarantee transport home as he sometimes has therapy, doctors’ appointments or daycare. It needs to be refrigerated within four hours and has a 24-hour shelf life.
As of now we are just sending one package of Compleat to school for the nurse to feed him. It’s a 300ml package and he only gets 210mls with 60mls water for his school feed. This not only wastes 90mls of formula but makes his other three feeds for the day thicker. More than half the time he is getting sick after his morning feed because his body is not use to the consistency of how we are making it at home now to offset for the school feed. This completely (no pun intended) defeats the purpose of him going to feeding therapy, which he started about a month ago.
I have spoken with several people at the school and school district. We are now speaking with the New York State Department of Education who is in turn telling us we need to speak with The Board of Nursing. I have also called our assemblywoman and a lawyer for advice. Logan’s team of doctors, nutritionist and case manager are behind us on this and are researching and fighting for us as well.
This has been going on now for almost three weeks….I just want my child fed the way he needs his nutrition. Why is this any different than a child bringing in a bagged lunch. I am not arguing the fact that per law, a licensed nurse has to feed him in school. The problem lies in that the procedure by which he gets fed is considered medical (in a school setting) and all medicine requires a label but this isn’t medicine, the contents of the formula are nutrition. If this was medicine, I get it, they need a labeled bottle and script from the doctor. To me, this is discrimination. My son is being discriminated against because he can’t eat by mouth (yet) and the “law” is dictating what and how he is fed. How does this trump Logan’s nutritional needs?!?!
We have researched and read many laws and regulations on the state level and some are contradictory and some state “best practice.” To me, “best practice” is a guideline not a hard and fast rule. We can’t be the only family in the State of New York whose child gets tube fed from a pre-mixed formula at school. And by the way, we are not, I have proof from other school districts. But because this nurse that worked with Logan for THREE DAYS caused a stink, we have to fight the “law” that contradicts itself!
As I am writing this out, it seems like such a simple fix. Feed the child based on doctor’s orders….
I won’t get into some other details (regulations that have been shared, emails, phone calls, who specifically we have spoken to) until this is resolved as to not harm our case but this is the basis of what we have been dealing with for the past three weeks. The “law” contradicts itself and we are being told (in not so many words) that it’s more important than my son’s nutritional needs.
My husband and I have missed countless hours, if not days of work between phone calls, emails, reading and researching regulations and laws and sometimes going to Logan’s school to feed him. How is this in anyone’s best interest?!?!
As of yesterday, we received two phone calls reassuring us that we are doing the right thing and that what’s happening here is just “splitting hairs.”
I will NEVER stop fighting for my child!!!!