Stanford – The Lucile Packard Children’s Hospital

May 17, 2019

“For I do not seek to understand in order that I may believe, but I believe in order to understand. For this also I believe-that unless I believe I shall not understand.” 

– St. Anselm

John Lee was transferred to Lucile Packard Children’s Hospital at Stanford University. Amy and I arrived at the hospital soon after he did. They were settling him in when we arrived.

The attending doctor briefed us that they are transitioning him to the care at this hospital. It will be different from what he was getting at Rady’s Children Hospital. For instance, they are weaning him off the paralytics he was on. We were already able to observe some movement.

The NICU cardiologist spoke with us and mentioned that they may repeat most of the procedures that were performed at Rady’s to get a better sense of how to approach John Lee’s care, this may include the Cath Lab. The decision about how to approach the surgery will be made next Wednesday.

At Stanford, the leading cardiologist for John Lee’s condition is Dr Frank Hanley. Another Cardiologist who may be in involved is Dr Michael Ma. We told that Dr Hanley and his team at Lucile Packard performs similar procedures, to what John Lee is anticipated to have, at least four times a week. We are blessed to have the team here taking charge and care of our baby.

UPDATE: May 17, 2019 11:00 PM

They moved John Lee to the unit where he will have surgery. The main concern is that he is pumping too much blood to his lungs and not enough to the rest of his body. The current goal is to maintain his blood pressure and get him to Wednesday. Other options include intervention this weekend if necessary. Dr Hanley is available if called upon. For now they are running tests and watching him.