So we once again spend the weekend in the hospital, yes I know he just came home Tuesday but we seemed to have learned something in the process.
Due to the low protein diet that L is on, he does not get enough calories and glucose in his diet. Even though he is allowed added junk food as opposed to my other children. However, it isn’t quite enough. So we now have an RX for a special oil to add to his diet and more formula to add more calories.
It is my thinking that he needs to come of the Adderal and be placed on a different type of medication to increase his appetite because he doesn’t want to eat half the time. Oh and he is also taken medication to increase his appetite so that he will eat more but specifically more of normal food that he can have.
His behavior was so out of control even at lower levels of the ammonia and it is frustrating. It is frustrating because you can’t help him, you can’t change it instantly and his brain doesn’t allow him to change it. It can be very nerv wrecking and wearing on ones patience when your child changes his or her mind every minute (and this be the truth).
Well, here is to hoping we won’t have to go back so soon.