We finally returned home after 9 days in the hospital. Lily can now get some real sleep so her body can heal. She will remain on antibiotics for the infection and we will continue to find a balance of medicine to control her worsened spasticity without keeping her “snowed” or knocking her out. Life is […]
Thank you everyone for keeping Lily in your prayers. Her surgery went “without any surprises.” Her surgeon said that after he cleaned up the outer skin he could see the pump had broken through her skin and that he could even read the serial numbers on it. There is no doubt that it had to […]
After a super-fun weekend of celebrations (Sister Charlotte’s 7th and her Grammy’s 70th) the tides changed. Late Sunday the blister on her Baclofen pump ruptured. This was what we feared all along. Since it’s now an open wound and is infected, the doctors said it must come out. She was admitted to Miller Children’s Hospital […]
Lily remains in the PICU today. She is recovering and doing well. She is being kept comfortable with moriphine but hopefully that wont even be necessary by tomorrow. And now that she has the Baclofen pump her doctor has already eliminated her other spasticity medication and is weaning another one. And boy what a difference […]
Sorry we didn’t post yesterday. I know everyone is anxious to hear how Lily’s surgery went yesterday morning. According to her cardiologist everything went “smooth”. They were able to successfully implant and test the ICD. Her procedure took about 2.5 hours. She is still experiencing pain from the procedure and we are trying to keep […]
Les and Jim ask that you keep Lily in your heart and in your prayers for her this morning as she undergoes her first heart procedure, a heart study. Wires fed through femoral arteries that lead to her heart will inject dye so they can see what happens to Lily’s heart when it beats irregularly. […]
