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I'm trying to get my head around the 'medically fragile' term as well.
My daughter is sort of betwix and between. Her diagnosis is Pallister-Hall Syndrome, which comes with a whole host of sub-conditions. My understanding is that there are only a few hundred people in the world with PHS.
Right now she is the picture of health, and rarely sick in the traditional sense.
However, she is on growth hormone for pituitary dwarfism and lupron for central precoccious puberty. This is probably due to a growth on her hypothalamus.
When M got here in 2000, she definitely WAS medically fragile. A friend of mine who saw M in the orphanage in Cambodia was sure that she wasn't going to survive. Six abdominal surgeries, a bowel obstruction, and a fungal sepsis later, she was on the road to good health. Because of all those abdominal surgeries, there is still some risk of a blockage, although since it's been nearly eight years, the chance of that happening continues to diminish.
She also was born with extra fingers and an extra toe. Again, right now her hands and foot are OK, but she will need major reconstructive surgery on both of her hands sometime in the future. She has already had surgery on two of her fingers and her foot.
Because of all the abdominal surgeries, she has a MAJOR scar that bisects her tummy. That too needs to be repaired down the road.
She also needs major orthodontia because she has no top front teeth. The baby teeth were so rotten they had to be pulled and the permanent teeth have never come in.
M has a bifid epiglottis. Again, it's not causing a problem right now, but may need to be repaired in the future.
Etc. Etc.
So, while she is currently healthy, managing her health care so she stays that way is complex and time consuming. I'm not sure that 'medically fragile' is really the best term, but I don't know what else to use. She's not really chronically ill, either.
So anyone have any ideas on what the right term is?
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