We had a bad night last night. India had many pain attacks, needed lots of stretching, repositioning and comforting. We hardly slept at all.
She is having a really hard time swallowing food, it takes ten swallow attempts to just just get a spoon of pudding mixed with water down. They are telling me that it's a combination of her being exhausted and the muscles in her throat being very weak.
The doctors want India to only take in food through her NG Tube because they're afraid of her aspirating. I'm struggling with this because I've made many different mixtures of really good and healthy pureed food that she loves. She's not aspirated whatsoever during my feedings and I'm worried that by taking her oral food away which tastes great, it's just another hit to her morale.
Hoping for a better night tonight.