Help Kowen get a Diagnosis

Kowen is a 4-year-old that loves to be outside, dinosaurs, anything to do with fire trucks, and playing games with his 2 older sisters. Everything started in July of 2018 when Kowen could not keep down any food or drink. After multiple tests, antibiotics, and doctor visits he was sent to the ER in Alexandria for a CT scan. He was immediately sent by ambulance to Lafayette due to a mass in his abdomen on his small intestine. After 5 biopsies, an exploratory surgery that left him with an 8 inch abdominal scar, a stay at Ochsner’s, multiple stays at Women and Children’s in Lafayette, a PET scan, weekly ultrasounds, additional CT scans, and consultations with St. Jude’s they were then able to rule out cancer, but in October of 2018 the doctors still had no idea what was wrong with Kowen and we had to find someone else to see him. In November of 2018 he was seen at Children’s New Orleans where additional biopsies where done and new medications were tried with no positive results. He was then referred to Cincinnati Children’s Hospital. He began seeing the doctors in Cincinnati in March 2019 where he continues to be seen to try to determine the cause of the mass and how to best help him. He can eat small amounts of soft foods, but the mass does not allow his body to absorb nutrients.
Kowen has since had a total of 9 biopsies at 4 different hospitals with no definitive diagnosis. He is currently awaiting Cincinnati to reopen and it to be safe for him to have his procedure. The doctors next step is to have a G or J tube procedure so that he is able to get enough nutrition and to receive an elemental diet so that a biopsy following the diet may show additional information to lead the doctors to a cause and possible treatment as the doctors have still been able to come to a diagnosis over the past 22 months.
The continuous travel, time off work, and hospital bills (even with 2 insurance policies) has drained our savings. We will continue to need to travel to Cincinnati in the future, the pump for his diet, and the elemental diet formula will be difficult with much of it not covered by Louisiana insurance.