Update

What an emotional week!!!!!! I am so mentally exhausted.

I swear, drs. can be complete idiots. I have spent the entire week advocating for my little man. These drs. are convinced that Avery has declined b/c of this keto diet which is not at all the case. On elemental formula he had not gained a pound in 9 months and once on this diet, he gained 3 pounds in 2 months which is huge for him. He was originally put on the diet to help slow the progression of his disease and lower his lactate level. Well it had definetly lowered his lactate level to within normal limits. I think his disease progressed b/c he has been through so much physically due to the blot clots and cochlear implant surgery. Basically his body is worn out. Then last month, he stopped sleeping b/c of some unexplained pain b/c he cannot tell us. Well we all know that if you have chronic pain, then how can you function let alone sleep. This is what I feel is my little man's problem. So they just assumed it was the diet and took him off it. Of course you feel drs. should know best but my gut was telling me know and I expressed my reservations about this. Well low and behold. He is off the diet and is in so much stomach pain and vomitting/diarrhea and complete discomfort and of course his lactate has shot up. Well not a surprise at all to me. So I demand that he go back on the diet or at least a modified version of it.

Tonight I am home b/c I NEED sleep. He did not sleep at all last night. So they finally agreed that this was unacceptable and gave him Ativan to help with his pain. This finally did the trick. So the plan is to get his pain under control and consistent sleep. They want to do a spinal tap and put him on an experimental med which I am not agreeing too. I feel strongly about him being back on the diet and getting his pain under control. Doesn't this sound exhausting. Well try talking to 12 drs. a day and telling them the same story. So this is where we are at. I am emotionally and physically spent. I will be back that the hospital in the early am b/c I have to do damage control at all times. UGH.....

Please continue to pray for comfort for my little man. Thanks