Day 7 at PICU

Lily remains in the PICU. Since my last post (and us raising the roof) her doctors changed her pain management plan. She has been on Precedex since Thursday and has been comfortable ever since. It has allowed Lily to get lots of rest. She had complications from her surgery; she had excessive bleeding from her incision as well as a hematoma. They were able to stop the bleeding by adding more staples to her incision and the hematoma should be absorbed by her body.

Now the plan is to start weaning her off the Precedex today. She needs to be taken off the Precedex because this is not a medication she can take at home. It is also a sedative so we are not able to see her true spasticity. And since she no longer has the Baclofen pump we need to access and adjust the oral Baclofen.

So it’s another day of rest and wait and see. Hopefully we will be heading home in a few days.

Thank you for your continued prayers and support.

God Bless,




  1. Sandi Knaup says

    Lord, please watch over and heal this little girl. Give her family comfort and courage. In your mercy. Amen

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