Lily continues the daily routine of rehab and rest. We walk a fine line of challenging her in rehab without causing her heart any distress. Although she is on medications to control her arrhythmia she continues to have sporadic breakthroughs. A few days ago She went for a stroll outside for the first time. She was very calm and awake which tells us she really enjoyed it. It’s our goal to get her up and out of bed a few times a day or as much as she can tolerate. Her eyes become “brighter” each day, meaning she is seeming more aware/awake. This is positive but at the same time seems to create more stress and confusion for her as well. Friday will be a big day for Lily, please pray for her (not that you’re not already!) She is scheduled to have surgery at 8am for her ICD (Implantable Cardioverter Defibrillator). We agree with her cardiologists that this is the best defense for her against her CPVT condition, especially once she leaves the hospital. She most likely will remain in PICU through the weekend and possibly move downstairs out of Critical Care early next week. She will remain here at CHOC and continue with her daily rehabilitation.
Thank you everyone for your continued prayers, love and support. You ALL are Angels to us, we are grateful to have you on “Team Lily”.
We received the most amazing gift, a caricature of Lily and her favorite friend, hand drawn by Alisa Grodsky, thank you friends, family near and far, from the bottom of our hearts your thoughtfulness never ceases to amaze us.