A big thank you to everyone who sounded with feedback regarding rehabilitation centers the response was overwhelming and very helpful! We visited Miller Hospital in Long Beach yesterday and were very impressed with their program and the head physiatrist. The good news is that Lily has been accepted into their program and we are thrilled as that was our first choice. We were set to transfer tomorrow (Friday) morning however Lily had a minor set back this afternoon. She went into v-fib (ventricular fibrillation) the same life threatening rhythm she experienced on July 8th. Thankfully her implanted defibrillator did exactly what it was intended to do, shock her heart back into a normal sinus rhythm.
Lily is now back upstairs in the PICU although we know this is a small step backwards it’s nice to see the familiar faces of her nurses that care so deeply for her. We don’t know how long we will be here, we have been told the doctors would like to closely monitor her as they modify her medications. As the doctors remind us it a process of trying to find the right combination that is beneficial to both heart and brain. We accept that this is a small step back and anticipate many steps forward in the very near future.
Please continue to hold Lily in your heart and prayers. We feel it everyday.