Today was a busy day for Lily, Monday through Fridays are bustling around here. She had occupational therapy where they sat her up on the edge of her bed and tried to engage her muscles to steady herself. Then she had a soothing session of acupressure/acupressure. Physical therapy then helped us move her to a wheelchair and she took her first stroll around the PICU floor. Next it was speech therapy where Lily was given some more popsicle and a little chocolate pudding to test her swallowing capabilities, which are improving. By this time its 4:30 and she has been awake and active since 9:00 AM. She needs a rest. She was calm and resting with her eyes open quietly for a little over 90 minutes when she went into another sustained arrhythmia.
Coincidentally her cardiologist happened to be in the PICU at the time and was able to witness her episode. Jim and I have been left feeling a bit shaky, this last episode was her 4th in less than 48 hours. But her cardiologist continues to reassure us that she is stable and these events teach them how to treat her most effectively.
So for now we continue to move forward with rehabilitation and closely monitor her heart. Her g-tube procedure has been pushed back; we hope Wednesday will be the day. This will be a welcomed move by Lily since her current nasal feeding tube brings her much agitation. Our hopes of moving Lily downstairs to the rehabilitation floor will be delayed; Lily will remain in the PICU for now.
Thank you again for your outpouring of love and support. We are thankful for everyone’s prayers and well wishes; they give us strength. We continue to hold-off on visitors for now; thank you for understanding.