Help Vinny and Fam

Hello everyone! As everyone knows Vinny has full trisomy 18 edwards syndrome. He also has a large VSD, pulmonary hypertension, horse shoe shaped kidneys, respiratory failure, and a few other deformities. He was born April 29th, 2022 prematurely at 34 weeks. Mom went back to work 12 weeks after birth. She eventually was let go from her job due to the housing market plummeting. Dad has been the sole provider for the family. Vinny has been in the hospital since birth. He was discharged December 21st, but readmitted December 23rd. The parents called 911 at home due to Vinny running a fever. He was taken to McHenry Northwestern first, and then rushed by ambulance to Luries. Come to find out Vinny had a nasty UTI which was treated with antibiotics. He continued to show signs of being in pain and eventually started having bloody bowel movements. Come to find out Vinny ended up with Intusseception which is where the intestines telescopes itself. This is not a trisomy 18 related defect, and usually only happens in older kids or adults. He had emergency surgery to fix his intestines January of 2023. Since this surgery Vinny became very reliant on opioids. Weaning from these meds has been very difficult. He was eventually paralyzed again for a month to let his lungs recover from hemorrhaging in the OR when they were taking him to get a MRI done on his brain. We woke him up the day before his first birthday which was on April 29th 2023 Vinny eventually aged out of the NICU and was transferred to the PICU. Since being in the PICU they started weaning the opioids very slowly in hopes of being able to get him home again. They started feeds again, and we were so close to getting off the medications. Well, Vinny ended up coding twice.