After a mostly uneventful stay (as long as you don't count two nights ago which involved vomiting connected to a seizure, and not a tube feeding, followed by nine more seizures in the next twelve hours), we are set to go home! Reuben's urine is steadily showing high ketones, and his blood work has been coming back with good results, and his energy level is good.
We have played LOTS of marbles. (For which I will have photographic evidence once my phone syncs with the internet.)
We're looking forward to all being home together again. I've gotten to be back for supper and jammies every night, which helps a lot, but is not nearly the same as being there all day with everyone!
In case anyone reading is interested, Reuben reached ketosis on a 3.5:1 diet, meaning that for every calorie that he gets from protein and carbohydrates combined, he gets 3.5 calories from fat. We're going to give him three enteral (tube feeding with formula) meals a day at a 4:1 ratio which means he can have one meal by mouth everyday at a 2:1 ratio, which means he can still have some bread and even a tiny bit of the nutella that he enjoys! And at the end of the day we'll still be averaging out the 3.5:1 that seems to be working for him.
Next will be to see what this does for his seizures!
No comments:
Post a Comment