So yesterday, we took L to the ER because he was acting funny..kind of lethargic, whiney..some abnormal behavior and so forth..and sure enough his ammonia levels were 276..gees…well so they admitted him, placed him on lipids and glucose and voila this morning his levels were 125 and this afternoon well enough to go home..this makes 8 visits so far this year…and very frustrating because it seems like no matter what we do at home..controlling his diet, making sure he gets his medications, and giving him the things he needs more of such as fat (calories) and sugar, it doesn’t do us any good.
I know there are times that he does well for a while..in the last year it lasted 6 months…but here recently its like he is in the hospital every 3-4 weeks.. and while we have worked out a system because of work and other children it doesn’t get any easier.
I would love to just find out what exactly it is that he needs when his levels go up. I mean I know they give him lipids, but what exactly other than fat is that. And yes we have asked can we get some for home that he can take orally because I’d rather not use the IV port to administer anything, if I don’t have too. Quite frankly, the best thing is to cook everything with oil i.e. olive oil which we have increased in his diet but again it didn’t seem to make much of a difference in the end.
I would love to get his diet under control more because he is on a strict protein diet, he is lacking some of the necessary things that we get from protein. However to supplement he is taking an amino acid formula but it isn’t enough, so it seems to me. We allow more of the “junk” I wouldn’t give to my other children at least not in the rations he is able to get them. He doesn’t like gatorade but it is high in calorie contend that is good for him and has all that other stuff.
Well that is my rant for the moment as he is walking into the door momentarily.