Update on Maddy. We are back in Cleveland. She had exploratory surgery yesterday and did great. Surgery was 6 hours. Followed by several more hours in recovery. Good news is they did not find any tumors or lesions.  🙌🏼GI  and other organs looked clean. Pouch looked good too. What that means is NO TRANSPLANT is needed!!!!! 

However, there was a lot of adhesions.  it bent a section of her intestine that should have been straight. Not allowing for even a scope to pass through.  

They fixed that, placed things back where it needed to be, biopsied from top to bottom as well as other organs too.      

Now we wait for  pathology/labs to come back and doctors to brain storm, figure out a plan to address the disease that still present. 

Today, she’s in an immense amount of pain.  Trying to get ahead of the pain to make her comfortable has been a challenge.  But, she managed to get out of bed, walk around her bed, to the hall right out side her room and back to bed.  For just having surgery yesterday, and the length of the incision down her midsection, that is huge. We are sooo proud of her!!!