Topic: The need for greater awareness in the medical community - Explain a situation where a clinician didn't understand tube feeding and what was the impact.
We have been very fortunate to have a couple really amazing hospitals who actually know what a feeding tube is. At our Children's hospital tube feeding is a pretty regular thing. We've only had to go to the ER a couple times since the move, so we haven't really had too many problems. We usually get more grief over doing a blended diet.
Spencer does a blended diet because it's better for him than formula and he tolerates it well. In the tube feeding community, blended diet is not the norm. Our biggest crisis we've had with tube feeding naturally involves the tube and his special diet. Spencer had to stay overnight in the hospital for his cleft palate repair. I called in advance to make sure his diet could be accomidated. I was assured by two different groups of people that it wouldn't be a problem.
After the surgery we were taken to our room. I had made it very clear and had them tell the floor charge nurse that we had a special diet. When I requested food later that night all hell broke loose. They didn't have any pre-made blends that could be sent up from the formula room like the told me. I basically got purees from the cafeteria and had to blend it myself with no blender nor even a bowl. I had to get them to give me Elecare and mixed parts of the puree with it. I was super crazy pissed.
Another instance where blended diet nor tube feeding has really been understood is at our WIC office. We left an amazing WIC office back home. Yeah you had to wait a million hours, but the staff knew Spencer and knew I knew what I was doing. We come here and the nurse barely even knew what a feeding tube was, let alone the blended diet aspect. I had one nurse practically shove Elecare down my throat. It wasn't until I told her that formula is full of awful crap for kids and we don't need it that she shut up about it. If my kid can survive on food that his dad and I can eat, then I am adamantly against giving him formula. I know some kids need it to survive, Spencer is fortunately not one of those kids.
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It is a relief to hear the same struggles over a blended diet come from another mom! We have been at war with our children's hospital over it, to the point that we actually thought they were gonna call child services! His pediatrician and dietitian stand behind us and support us 100% on it though which is a blessing. We have found if I throw enough of a fit they will allow me to make his blend at home and bring it into the hospital which is supposedly against "policy". Good luck!
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