So today I (mom) did Addyson’s tube change. It is harder to pull in and out than I thought. They said her next tube change we can do at home. She doesn’t need to see dr Nasr (surgeon) for three months but we need to stay on top of Gi appointments for the motility piece. She is going back to daily flushes. She should be rechecked to see if the Sibo is cleared up or not. He mentioned motility meds again for her stomach and due to the results of the sitz marker study.
She saw her psychologist today. We discussed some of her new symptoms. She said definite anxiety and even threw out medical ptsd. She said she will write a letter for school and that we need a signal to quietly redirect Addyson when doing the behaviors so that we are not calling her out on it and making her more anxious.
Overall really nothing unexpected from her surgery follow up or from psych, just some adjustments that we will work on.
Beaming with hope 