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You are here: Home / News / Baclofen Pump Refill Today

Baclofen Pump Refill Today

June 30, 2011 by Ryan's Rally LLC 8 Comments

Ryan has a baclofen pump surgically implanted in his abdomen. It’s roughly the size of a hockey puck. From there, a catheter runs around his torso to his spinal column. Medicine (baclofen) is delivered directly in the spinal column, thus eliminating the common issue of a drugs ineffectiveness of passing through the blood-brain barrier — since it carried directly to the brain via the spinal fluid.

 

via www.mayfieldclinic.com

 

This drug, in most cases, relaxes the skeletal muscles. In turn, it reduces the frequency of “posturing” (stiffening of the body, like the stupid new craze called “planking”) and spasms. Currently, Ryan receives 400 mcg per day at a continuous rate (or 16.7 mcg/hour). Early on, he was receiving well over 1,500 mcg. The last reductions was in January (while he was in the hospital) from 425 mcg to 400  mcg.

The exact model Ryan has. via www.donnywinn.com

As helpful as it is, it can cause people to become flaccid. So relaxed that they simple cannot move easily. An obvious objective is to avoid this, but overshooting can cause bigger issues. So, it’s always a judgement call to lower the dosage. Clearly, we take this risk and will again today. It’s a calculated trade-off, but the fear is he will start “storming” again. Usually within 24 hours.

A nurse technician will make a home visit this afternoon to refill and reprogram the pump. After refilling the reservoir Ryan will be reduced to 375 mcg per day at a continuous infusion rate (15.6 mcg/hour). I know this doesn’t sound like a huge reduction, but it is. Baclofen, in this form, is extremely powerful stuff. Think about it… it’s measured in micrograms, one-millionth of a gram… the smallest commonly used measurement of mass. Protocol never allows reducing it by more than 10% for risk of withdrawal.

Oh, yes, the next twenty-four hours will be tense indeed. I hope, for Ryan’s sake, my instincts are right.

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Filed Under: News

Comments

  1. Gail Doyle says

    June 30, 2011 at 2:27 PM

    Ken ,I also would trust your instincts about Ryan over any Dr .Yes I know we all need their input but no one knows Ryan better than you and so far you have been amazing .Praying all works out and will be fine Gail

    Reply
    • Nicole says

      June 30, 2011 at 3:46 PM

      Couldn’t agree more! Still here, every single day.

      Reply
  2. Paula says

    June 30, 2011 at 1:35 PM

    Praying for protection, peace and healing.
    Love & hugs, Paula

    Reply
  3. Peggie says

    June 30, 2011 at 12:08 PM

    Hope all goes well and Ryan makes it through the adjustment peacefully. Praying for a most peaceful transitioning for him. Ken, you are doing an incredibly awesome job caring for Ryan. Continue to trust your instincts.
    Love, Peggie

    Reply
  4. Karen T says

    June 30, 2011 at 11:40 AM

    thinking of Ryan especially today – love you all

    Reply
  5. Vicky Scott says

    June 30, 2011 at 10:20 AM

    I would trust your instincts regarding Ryan over any doctor.

    Reply
  6. cared_citizen says

    June 30, 2011 at 10:17 AM

    me too!

    Reply
  7. Dianne says

    June 30, 2011 at 8:54 AM

    I have been in awe of your instincts with Ryan. I think your instincts are spot on this time, again. Your dedication and love is unending. Trust yourself and be confident in your well-thought out decisions. We’ve got your back, Ken. SHSP, NGA. Hugs to Ryan, and you too Ken!!

    Reply

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