I have not had much of a chance to sit down at my computer for several days. Most of my time has been on the phone.
First for scheduling. Brayden is officially scheduled to start the ketogenic diet. He will be admitted to Children's April 5th. He will be there for at least 4 days. He will be closely monitored not only to start this diet but also because of his unexplainable G-I history/problems. He will be doing this diet through his G-J tube, and I have yet to find parents that have done this diet via j-tube (so if you know anyone, pass them my way). We are working to get things set up for his life on the keto diet.
Secondly, Brayden's waiver. Boy, I have been on the phone way too much about this. In Virginia, Brayden is currently on something called the EDCD waiver. He got on this waiver before he even had a feeding tube and was only on a few medications. Since that time, Brayden's medical needs have escalated. He waiver is being re-evaluated, adjusted, whatever... What all of this means is that Brayden will no longer have an attendant, he will receive nursing care. After coming home from the hospital, Brayden will have two nurses that will be at our home to assist with his care.
The transition of things two things has been very time consuming. I have talked to many people at VA DMAS, local case worker, local department of health, the doctors, several nursing agencies, the hospital and more. I talked to all of them several times, collected lots of paper work and had a few meetings. All the while trying to navigate these changes with the least amount of problems.
To recap, Brayden starts the ketogenic diet and will be receiving full time nursing care at home.