Have a Heart for Rhae of Sunshine
Donation protected
Rhae was diagnosed 10 days after birth with Transposition of the Great Arteries, Arterial Septal Defect, and multiple Ventricular Septal Defects. At 6 months old, she was also diagnosed as Double Outlet Right Ventricle. On July 26th, Rhae was admitted to the Cardiac ICU at Children's Hospital of Philadelphia for her 3rd open heart surgery. The total time im the operating room was 9 hours which included a very long bypass run that she initially struggled to come off of. In her Post Operative course, Rhae has struggled with Pulmonary Stenosis, residual Ventricular Septal Defects, and Aortic Insufficiency. All these issues together are causing biventricular dysfunction and making her unable to wean off her IV heart failure medication Milrinone. We are now looking at either another operation or possibly a Heart transplant. The heart failure team is seeking consent to start the Heart Failure workup, to see if Rhae is a candidate for transplant. Rhae's care is currently at Children's Hospital of Philadelphia, which is 3 hours from our home.
After her surgery, Rhae donated books she collected for her 1st Birthday to the Cardiac Neuro Development Follow-up Clinic as part of CHOP's Reach Out and Read program.
Rhae's father has had to return to work in the Army as a Standardization Instructor for enlisted UH 60 crew members and commutes to visit on the weekends. We have now been in the hospital for a month with no planned date of discharge at this time.
We have created this campaign to alleviate some of the costs of the long term stay away from our home, to help with food, commuting expenses of gas and tolls, and cost of items to make Rhae's stay more comfortable like balloons, crafts and toys, and clothes appropriate to wear around her medical equipment. As a transplant recipient, there will also be future ongoing costs associated with medical care, therapies, and eventually another transplant as hearts last an average of 10 to 15 years.
Meal vouchers or Gift cards for facilities at Children's Hospital of Philadelphia can also be purchased directly at http://www.chopgift.com/category_s/29.htm
https://www.facebook.com/groups/1470641336356849/
After her surgery, Rhae donated books she collected for her 1st Birthday to the Cardiac Neuro Development Follow-up Clinic as part of CHOP's Reach Out and Read program.
Rhae's father has had to return to work in the Army as a Standardization Instructor for enlisted UH 60 crew members and commutes to visit on the weekends. We have now been in the hospital for a month with no planned date of discharge at this time.
We have created this campaign to alleviate some of the costs of the long term stay away from our home, to help with food, commuting expenses of gas and tolls, and cost of items to make Rhae's stay more comfortable like balloons, crafts and toys, and clothes appropriate to wear around her medical equipment. As a transplant recipient, there will also be future ongoing costs associated with medical care, therapies, and eventually another transplant as hearts last an average of 10 to 15 years.
Meal vouchers or Gift cards for facilities at Children's Hospital of Philadelphia can also be purchased directly at http://www.chopgift.com/category_s/29.htm
https://www.facebook.com/groups/1470641336356849/
Organizer
Mel Caletz
Organizer
Philadelphia, PA
