To catch everyone up

I am trying to do my best to keep everyone up to date on Addyson. Here is the latest from Friday. Friday’s procedure went well, the surgeon is confident that he got a good biopsy. We should have those results by Wednesday. Addyson goes back to see him next Wednesday to discuss next steps. He told us Friday that she has a very redundant colon and that he is thinking another surgery here in her future might be what’s needed, but for us to take some time and consider the risks/benefits. Ideally the at home protocol we have been doing hasn’t been helping her as much as the surgeon would have liked. He threw out an option of performing a partial colon resection (via the pull through technique) to lessen the redundancy in her colon. Then he would do a cecostomy which would give her a “button” on her stomach in which she could push her own colon cleansing meds daily. The surgeon said his hope would be to reverse her cecostomy by adulthood.

What is a Cecostomy button? A cecostomy tube or C-tube is a thin, soft plastic tube that is put into your large bowel through a tiny hole in your abdomen. The C-tube allows you to put a flushing (irrigating) solution directly into your bowel.
Below are the tests Addyson has had over the summer through now:
  • Barium Enemia Test (JUNE )
  • NG Tube insertion / STOMACH clean out / Colonscopy and Endoscopy (JULY)
  • Anorectal Manometry suggests Hirschsprung’s disease (AUGUST)
  • Rectal Biopsy to confirm HIRSCHSPRUNGS DISEASE (SEPT)

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