Juan’s Big Heart

Juan was born with Hypoplastic Left Heart Syndrome where he was only born with the right side of his heart. Since he was born he had 4 open heart surgeries and a pacemaker placed. Juan was placed on the heart transplant list at a status 2 last May of 2018 after his heart starting showing signs of blood clots and he was diagnosed with a rare condition called plastic bronchitis where he coughs up lymphatic tissue. Since then this past January in Delaware at nemours we had a surgery to help get rid of the plastic beonshitis but it was a 50/50 chance of it going away. Unfortunately since then we have been in out of the hospital and Juan's health has taken a different turn. His heart has been jumping in and out of afib and tachy cardia rhythm and even with his pacemaker his heart is struggling. His heart is not pumping well so blood clots are forming and he has been coughing them up recently. He also has been retaining fluid and his electrolytes have been out of balance. His eating habits have been pour as well. We currently just got admitted at UF Shands childrens hospital and now were told today that our status has changed from a 2 to a 1A. That means Juan will have to live in the hospital until a heart is ready for him. He is not well enough anymore to live at home until a heart is ready. Unfortunately with this comes alot dealing with his depression and anxiety. He will have to be homeschooled on the hospital. Keeping him busy and moving and staying positive will be a top priority. We are going to need help with funding towards staying close to him so we are raising money for the extra expenses like Ronald McDonald housing for the parents to be able to stay close and take turns, gas expenses for travel seeing as we live 2 1/2 hrs from Gainsville and in winter haven,florida, also food and things to keep Juan busy like books games ect.. We do not know how long he will be waiting for a heart it is an unpredictable situation of timing. Anything you can give will be greatly appreciated.