November 12th my son PJ had a outpatient appointment with the cardiologist and they did a EKG and a echocardiogram. We were walked to the emergency room and he was careflighted to Lucile Packard Children's hospital at Stanford. He was admitted to pedicatric ICU and they started him on a remodulin pump to treat him for pulmonary hypertension. The medication had a 50/50 chance to make him better. Unfortunately it made him worse and on the night of the 17th he stopped breathing and went into cardiac arrest twice. They preformed CPR on him for 34 minutes. He suffered a moderate stroke on the right side of his brain. They intubated him and successfully got him on the Veno-Arterial ECMO machine(lungs and heart) He has been stable and they decided to do a Potts shunt heart surgery November the 23rd. The surgery went as planned but with more bleeding than expected so they did give him some
blood. They will be giving his heart time to rest before switching him to the Veno-Venous ECMO(provides support to lungs only). He will continue to be intubated until his heart is strong enough to support his lungs. They've done lots of bloodwork and testing to see what's causing the pulmonary hypertension. The doctors are thinking its pulmonary veno-occlusive disease but its still unclear. The only treatment option for PVOD (Pulmonary veno-occlusive disease) is a lung transplant. I have a meeting with the transplant coordinator on Monday the 26th to go over what a transplant entails for his survival and the workup details.
I am katies bestfriend she asked me to create this for her because she has a lot going on. I will be posting updates that come directly from her. Thanks everyone.