Tuesday morning she awakes vomiting yellow bile, distended abdomen so bad that her feeding tube was indented inward and leaving a mark and running fever and pain much worse in upper abdominal area, so as a nurse and a CF mom, my mind automatically thinks.... Pancreas, liver, gallbladder, etc!! so I scheduled appointment at her primary care to be examined, where urine had blood in it, CBC was slightly elevated and X-Ray showed what appeared to be an intestinal blockage. We were told to go to Uva ER as soon as possible.
She was admitted with DIOS, after ruling out all my other fears of pancreas, liver and gallbladder and kidney stones(which she's had before).
DIOS is another CF complication known as digital intestinal obstruction syndrome.
She was immediately given 6 adult doses of miralax, colace, senna and 2500ml contrast enema. Great results but not enough! Meds were continued Wed and again on Thursday, was added 4 liters of Golytely on top of other meds...... She only had less than 10 BMs after.... Which is unheard of.... She still has huge appetite throughout all of this which amazes me of her strength. Vomiting and fever have gone but X-ray and pain still continue. So again on Friday same meds were given again but two 2500ml (5 LITERS) enemas instead!!!! Tons of stool and very hard mucus are coming out but small bowel are still distended. So here we sit at UVA 4 days later.... Multiple BMs later, Still waiting on her bowels to clear and her pain to subside. Yet another reason to hate this disease.... It complicates everything.... Making life for my kids harder than it should, but shows me just how amazing and truly tough my kids are.... Living with pain and breathlessness everyday.... And never complaining! They are my heros!!! Doctors, X-ray techs and nurses to are amazed at all she has been put through and yet she still smiles and never complains!!!