I have a daughter who has medically complex needs. She has just recently had a test done that showed she was aspirating on the liquids she was drinking, even when we thickened them. This means that when she drank, some of the liquid would enter her lungs.
An earlier test showed that she would choke on many solid foods. Her eating, chewing, and swallowing muscles were getting too weak for her to safely continue to eat or drink by mouth. Between the risks of her choking and getting pneumonia, it was not in her best interest to have food or drink by mouth anymore.
This was easy for me and for her father to understand. But what about her? She is a 13-year-old who functions on a 1st-grade level. She really liked her mealtimes. The small amounts of food she did eat, she enjoyed.
We have to create those feelings in different ways now. Keeping her involved and included at mealtimes is a must! She can have some applesauce throughout the day. We make sure she has a small bowl of it with a spoon at family mealtimes. She can lick on her spoon while benefiting from the social interactions during the meal.
Another good activity she can do at mealtime is play with her toy plastic food. Or she can look at books or do puzzles.
My daughter is verbal, so in the beginning she would ask when she could eat. I would explain it in a way I hoped she could understand. I would say things like, “The doctor put the button in your tummy to help you eat and not choke,” or “The button helps you stay healthy with no cough!”
Another approach I will sometimes use is just plain old distraction. “You can’t eat right now, but you can play on the iPad.” The iPad is one of her favorite activities. And lastly, I would let her help with her feeds anyway she could, from holding a syringe to opening the gauze pad wrapper. These things helped her and our whole family adjust to NPO (which means Nothing by Mouth).
Sharon has written several articles about her family and their experiences, especially the journey of getting a g-tube for her daughter. Read more of Sharon’s work here.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.