Baclofen pump

The baclofen pump is a hockey puck sized device surgically implanted in her abdomen.  Tubing runs under the skin, around her side and inserts into her spinal fluid (CSF).  The pump is filled with a medicine called baclofen and it continually puts the baclofen into her spinal fluid.  The medicine helps decrease spacticity (tight muscles).  In Ellie it helps with tight arms and tight legs.  Her torso is not tight.  She has spacticity due to brain abnormalities.


The supposed infection is in her back along the tubing. There may be more infection up higher along her spine also.

I do not know the exact plan.  I am assuming they will pull out the pump and the tubing and then proceed to kill all of the infection before doing another surgery to replace the pump and tubing.  I do not know if orthopedic surgery will try to locate the other fluid collection along the spine and clean it out.

They will be once again taking her off of her feeds and prepping her for surgery.  Although We do not know if surgery is actually going to happen or what time or what they will be doing.

There will be several problems we need to overcome...#1) if you stop the baclofen suddenly (like we would be doing) you can go into withdrawal.  #2) without the pump she will need to take oral (g-tube) baclofen which isn't as effective.  #3) we are also risking her developing even worse contractures (tight muscles that you cannot stretch out).  #4) with the baclofen withdrawal it can increase seizures.

They have written orders for oral baclofen and ativan for tonight if she starts showing symptoms of withdrawal (muscle tightness, clonus (bouncing muscles), increased seizures).