Addyson will be going back to Hopkins tomorrow at 1130. She was supposed to get 6 full weeks off, but her body has other plans. We are pretty confident that her tube site has an infection. Her stoma nurse has seen the picture of her current situation and agrees something is going on. her Gi nurse and surgeon are both outta town so they advised she see her pediatrician. He called me and said he can’t see her till 330 tomorrow and he’s not sure he’s equipped to address and tube infection. They advised we go to the er. I tried urgent cares but they too won’t address tube infections. Needless to say after 8hrs of back and forth with her entire team we have a plan of 1130 tomorrow w the surgical team (just not her surgeon). It could be that the button is the wrong size, an infection on the outside or it could be an infection on the inside which I don’t even want to know what that would mean. We are also going to get an X-ray while we are there tomorrow to see how her motility situation is looking! (We will already be there so why not) ;-). Addyson is at her sports for the night and acting okay even though the site is warm to touch and red. she is a trooper and we couldn’t be happier with her through all of this. I think addyson is realizing the reality of all of this and at times she expresses her discontent and we completely get it. It’s hard to accept some days that this maybe the best success we ever see from surgery. We were originally told flush one time and day and be good for 24hrs but that is not yet her case. We are holding onto hope that she sees that level of success at some point but we know in reality that may not happen.
We are still waiting for her whole exome gene sequencing to come back. It could be any day now. They said 8-12 weeks and we are at the 8 week mark. Praying it gives us some answers
She is an inspiration for us daily on how to keep smiling through it all 😊💕 the ups and downs of life and medical complexities.
Beaming with hope 