The last week in October, Angela and Devon spent some time in Washington DC at Georgetown University Medical Center and came home on Friday, 10/29 with some answers.
Devon has been having issues with malnutrition, lack of energy, nausea and some pain and discomfort, prompting the visit. Doctors evaluated her and performed an endoscopy to determine the overall health of her colon and remaining intestines. A go-forward plan was to be determined based on the results of their tests.
– They confirmed Devon’s low levels of vitamins and minerals and adjusted her TPN (Total Parenteral Nutrition) IV intake. They added an oral nutrition shake to her daily diet routine to help address this. They will track the effectiveness of this nutritional change during her daily ongoing home nurse visits.
– The endoscopy uncovered a fistula (an abnormal passage, basically a “hole”) which had formed where the colon was stitched to the intestine. They also found a fermented clump of undigested food in her colon. The medical team suspects the likely source of the pain and nausea may be caused by either the fistula or the fermented clump of food, or both!
Unfortunately, it seems that the endoscopy may have disturbed the fermented mass and caused Devon to have a very bad reaction. Shortly after the procedure, she began to feel terrible – shaking, her skin turned pale, and also developed dark rings around her eyes. Luckily, she was still at the facility and they were able to monitor her and get her closer to normal again.
The take-home course of action for the next couple of months includes;
– no oral food other than the nutritional shakes
– continuing with the adjusted TPN feedings
– regular stomach injections to improve the absorption of nutrients, and possibly help close the fistula
– more physical activity.
They confirmed the need for the small intestine and colon transplant and indicated she may be able to get on the list in the next couple of months. They also emphasized that as long as the transplant goes as planned, there will be a lifetime of appointments, issues, and testing, and it was a harsh reminder that this is never going away. Devon has been feeling angry and frustrated about her situation, but is the most excited of anyone to make progress. Throughout all this time, Devon has received personal counseling from the social worker to help mentally deal with her current situation and understand expectations for the future. EVERYONE is looking forward to the transplant to move into the next phase of recovery and getting Devon back to feeling as normal as possible and to be able to live the young, fun-filled life that she deserves.