16 year old with Rare SMA can not digest food and family needs help

Reagan was diagnosed with Primary Immune Deficiency Disease when she was 4. She started infusions at age 9. She has had her tonsils removed, adenoids removed, and a sinus surgery twice. Reagan has chronic migraines and in March was diagnosed with POTS. Last year Reagan started to lose weight. The GI at PCH ran tests and she was diagnosed with Gastroparesis and Gallbladder Hyperkenisia. She was out on erythromycin 3 times a day to see if that would help. It did not, Reagan would still cry after eating sometimes from the pain and would have to run to bathroom immediately. Reagan has now been diagnosed with SMAS which is Superior Mesenteric Artery Syndrome. Her artery is squeezing her small intestine and blocking the food from going through.