Please help us give Damon best quality of life.

I will start by saying this is our beautiful son Damon. Damon was born with a giant omphalocele (organs grew outside his body into his umbilical cord), with this came along a heart defect (he has 3 holes in his heart which can not be repaired), severe systemic pulmonary hypertension (lung disease), pulmonary hypoplasia (preemie lungs because of his omphalocele) and possible tracheobronchomalacia. He has spent most of his life on mechanical ventilation and has a tracheostomy and lives on a ventilator. Damon's conditions are terminal and he was not expected to live past 6 months old. He is now 21 months and a super happy boy learning more each day and growing. We (and some of the medical staff) have advocated for his human rights to spend the rest of his life at home (except for infections that need hospital treatment) and we hope that his quality of life will improve and that he may thrive at home. We have had many scares with Damon but he has improved so much and is doing so well that he will be coming home this summer! We are asking for any help possible as there will be expenses, such as medical transportation costs, medications, hospital visits, extra things that we will have to pay that we wont even know about yet. Having our child in hospital for the last almost 2 years has been emotionally and financially draining on our family. We would be so thankful for any help offered to assist us in making this the BEST life possible for Damon.