Helping Sofias Heart

Sofia was born with a very severe heart condition called tetralogy of Fallot With pulmonary atresia And mapcas. In other words Sofia was born without her pulmonary arteries and valve. She wasn't diagnosed until after birth when she was admitted to 3 different hospitals in one day at 7 weeks old. At first they thought she had pneumonia, then the second hospital said it was bronchitis, and the third hospital finally diagnosed her with her heart defect along with a chromosome deletion syndrome called 22q11.2 deletion syndrome or aka digeorge syndrome . Once admitted to the last hospital (brenners children's hospital) sofia had many tests and procedures done to determine how severe her case was. After 41 days in the NICU, a gtube and Nissen placement and caths sofia was released to go home. She was suppose to have her first surgery at 6 months of age. After speaking with the surgical team at Brenners we were not convinced it was the best place to have it done so we researched Boston Childrens. Finally, after months of trying to get approval from insurance and denial from all the hospitals in NC to do Sofias surgery, we were able to bring her to Boston Children's Hospital.  June 2014 was when Sofia finally had her first heart surgery,  and June 2014 was her  second, and third. We finally left BCH in August of 2014 after a long recovery and many procedures to wait for 6 months before her next surgery. We returned  to BCH January 2015 for heart surgery #4. She had her surgery January 29 and had many bumps in the road afterwards.  Due to Sofia being intubated multiple times in the past 2 years she has developed chronic lung disease. She has also developed pulmonary hypertension due to the pressures in her right aide of her heart still being on the high side. During our stay here Sofia developed a blood infection from her picc line.   We are still waiting to get some test done and wean her from her medications, and finish her antibiotics to cover the blood infection. We still have to have an MRI to check if there is any damage from being on sedation for so long and also from being on bypass.  We are looking at being here another month and then we will be returning every few months for catherizations and any other procedures she may need. If you are able to help by donating even a dollar we would really appreciate it. Thank you in advance everyone.