She has lost all of her ileum and a little bit of her jejunum so she's missing the parts of her intestine where sodium, water, fat-soluble vitamins, and vitamin B12 are absorbed. They draw her labs each week and the only concern so far is that her potassium keeps increasing even though they keep decreasing the potassium in her TPN, so they/we are watching that closely and monitoring her for dehydration. They/we are also keeping a close eye on her bilirubin level because it has slowly been creeping up and high levels are indicative of liver damage (she's on meds to slow the damage the TPN is causing).
With short bowel syndrome, she'll continually be at risk of:
- bacterial overgrowth (bacteria moving into the small intestine from the colon) & malabsorption because she does not have an ileocecal valve
- TPN-associated liver disease (the longer she's on TPN the more at risk she will be)
- intestinal blockage at the connection site due to scar tissue
- central line breaks & infections
- diarrhea and very bad diaper rash due to constant diarrhea (she's always had the diarrhea but just started developing the diaper rash)
- needing an intestinal & liver transplant down the road
Carlee got to visit grandpa & granny's house for the first time last week and loved getting doted on by my cute niece Zyan. Carlee has just started to smile and coo and it's been so fun.
Favorite quote this week:
"We must approach our Eternal Father with broken hearts and teachable minds. We must be willing to learn and to change. And, oh, how much we gain by committing to live the life our Heavenly Father intends for us."