ChelseaT

My daughter Salem's story is a long one but please listen
Salem is 4yrs old and has autism on top of her diaphragm problem. She has autism and is gifted, has a memory like a computer lol. So its virtually impossible to get her any tests (xrays, blood tests, ivs put in ect.) I was ignored for the first year and a half about her diaphragm issues. But I was handed a miracle that she even survived that long! I refused to leave the hospital on dec 6th 2012 until they gave her an xray. They finally did, and found her large&small intestine and spleen through a big hole in her diaphragm. And rushed her into surgery. They found a 5cm hole and had to use a patch to fix it.
The good news is her lungs (for some miraculous reason) had formed great and had no sign of infection. We lived at hospital for 2 and a half weeks and had many things go wrong with the nuses mistakes.
After the surgery there has been multiple seriouse issues with her bowels, and ive been back to the emerge many times. Only to be ignored over and over again. All they keep doing is giving her an xray and sending us home. Her follow up apointments have been pointless. All an xray shows is if her organs are where they should be. But it cant show bowel kinckx, diformities or lesions. It also cant show any details of the hole or patch. So why no mri????
Now I'm at the point where she is holding her incision at least 20 times a day screaming when she lifts her arm or ,bends or if any pressure is placed in that area. She barely eats and keeps hicuping and pucking but swallowing it. On top of many other things. Apparently there is a 50 /50 chance a child with patch has a recurrence. Because as they grow the patch doesn't. So again why wont anyone hear me or listen...
I'm so scared and doing this all alone. And the last time we went was torture on us both. Because of her mental issues it took 4 grown men 35min to get her iv in. And she kept ripping out her nose tube everytime I went pee. She also broke the xray door right off breaking the bolt in half by kicking it. And that was at 18m old. Now shes 3ft5inches tall and superwoman strong. So I'm scard of how this can even go. After her surgery i wasnt able to give her any meds orally nor take her to doc without huge freekout sessions due to her memory of it all. It took me 2 yrs to get her ok with even getting a stethascope near her.
Being told there's nothing wrong on top of going nuts is breackin me. Please help us someone!