I am not looking for a pat on the back, but it is because of my voice that that rehab facility made a change. One voice CAN make a difference. Your voice can make a diffidence. Change is needed and we can each be a part of that change.
Michael was in the hospital for sixteen days before being transferred to rehab. He had lost 25 pounds by this time; he hadn't been able to eat (or even drink) for the first 11 of those days after the accident. Once he could eat, one of his first meals had to be removed when I questioned if it was gluten free---and it wasn't replaced with something he could eat. (And yes, I had shared his needs prior to this.) He was left with a jello. (I went into more detail about our experiences in The Syrup Maze.)
I was lucky that an amazing friend (who also has to be gluten free) brought appropriate protein drinks for him. Food! Dang it. We all need food! Its a basic need. But for someone with allergies or intolerances, food can also cause a lot of harm---- and they weren't meeting his needs well. It was VERY frustrating!
Why do patients with special diets have to rely on family and friends to bring in safe and nutritious food?! This mom was rarely going home, much less cooking! It did take a couple days, but it was a relief and a joy when dinner was brought up and the response to my question, “What’s for dinner” was met with a smile and a response, “Gluten free tomato soup.” Finally.
Rehab. I connected with them before my son was transferred and I was assured they could accommodate his diet. So what was he given (and what did he eat) the very first morning for breakfast?----NONgf cereal. His dad had stayed that first night with him and had to leave before breakfast. I arrived just after breakfast. Seeing him sitting up in bed in PJ pants instead of a hospital gown was wonderful. Seeing that empty box of NONgf cereal---I was pissed! (as a patient recovering from a traumatic brain injury, he wasn't up to questioning (or caring about) his food.
The food issue was a continued battle during his stay. His appetite finally increased, but what he was fed was far from what this mom thought appropriate for a patient who needed nutritious food for healing and tasty food for spirit. Twice I came in to discover his meal to be JUST cooked carrots, milk, and ice cream. Ridiculous! I was finally sane enough to go home more, and when I did it included cooking: white chili, chicken and dumplings, brownies, and more.
I am not here to totally blast hospitals. Those remarkable surgeons and nurses saved my son's life. He received amazing medical care and was taken care of by the most phenomenal nurses a mom could ask for for her child. When it comes to the needs of patients with special diets though-----wow! It was an eye opener. The stories I've heard in the five years since our experience have proven that this is an issue far more often than it is not.