My daughter is 22 years old with multiple disabilities.
Down Syndrome, Autism, non-verbal, hypothyroidism, type1 diabetes etc.
She had a subtotal colectomy on Sept 17. Went home after 6 days and
was recovering wonderfully. Weaned her off of the hydrocodone after
two weeks. Follow up visit told the doctor she was going to the bathroom
on her own, and back to her normal schedule. Then three days ago, we
suffered some kind of set back. She can't verbalize but what she does
do in situations where she is in pain is has a bizarre type of behavior,
she isn't eating or sleeping. When I called the surgeon, he sent us to the
ER to run a urinalysis, lab, xray and CT scan. Everything looked fine so
they sent us home. But she isn't fine, in her music therapy today she was able to
tell the therapist through pictures that she was angry and in pain. This is
from a girl who broke her leg and walked on it so she can tolerate pain. What
I'm talking about is extreme pain and I don't know why.
Contacted the surgeon's office again this morning and they didn't bother to
call back. My other daughter called and the nurse just was rude and said
the ER results were fine. This truly upset my daughter who then called my
disabled daughter's primary doctor who said he could admit her but if it
was related to the surgery no doctor would take her on if the problem
is related to the surgery. After much persistence from my daughter, the
surgeon finally called later this afternoon to have me try a suppository.
I've done two and there is nothing. He said I could call him tomorrow and
he will do a contrast xray of her rectum to see about the connection.
Can anyone tell me what kind of pain or problem could be happening to
my daughter right now since she isn't able to verbalize it to me.
Or any tests I can suggest to the doctor when I speak with him?
Mom to Madi