Removing Baclofen Pump

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 come out. She has been recovering in the PICU where her different doctors are working together to control her pain and spasticity. It has been a very rough 24 hours for her, she is in a huge amount of pain. It is heartbreaking to see her go through so much, it just brings us back to where she was a year ago. No child should have to endure such pain and suffering, God please give her the break she deserves!

Lily will remain in the PICU until a balance of pain medicine and spasticity medicine is reached. She will also continue to receive antibiotics for several more days. We will be here into next week.

Please keep praying for sweet Lily, she needs your prayers.

God Bless,



  1. Lily and your family are in my prayers daily-

  2. Sweet Lily,
    I’m so sorry you have to go through so much pain. I pray that the doctors can find fast a good mix of medicines that will take the pain away but still keep you awake so that you can still do your therapy.

    We love you and think about you all the time.


  3. Sandi Knaup says

    Just a little bump in the road. Onward and upward!! Go Lily!!!!!

  4. Hello, I live in LB CA. My son has a Baclofen pump and a blister has developed on the incision site. Doctors are already talking about removing the pump. I’m extremely worried about him. Please contact me if you don’t mind sharing your knowledge.

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