Today is both scary and exciting for the same reason. It is the day that Ryan is completely weaned from baclofen; a drug used as a skeletal muscle relaxer and an anti-spasticity agent. For Ryan, the baclofen was delivered in the most efficient way possible, via the spinal column. This delivery doesn’t cross the blood-brain barrier where effectiveness is compromised. The major drawback (aside from a catastrophic pump failure) is it makes a person lethargic.
Last June I decided it was worth the risk to begin bringing Ryan down on the dosage. The goal at the time was to find the equilibrium that kept him relaxed, but gave him the best shot at alertness. I never expected it to progress so quickly. I put my own fear aside and remained aggressive with the reductions. Hell, at that time it was not even my goal to end the treatment (although it was always in the back of my mind). It was simply to get him as low as he could comfortably tolerate.
Here we are, just ten months later and he methodically stepped-down from 400 mcg to 0 mcg later today. To say we pushed the envelope would be an understatement. We pushed, pulled, yanked, and crumpled it. Each time this happened was stressful over the ensuing three days. When I quantify it by adding all those days together it comes to just under two months (or 20% of the time) of anxiously waiting and watching to see if all fuddruckin’ hell would break loose. I hope, oh how I hope, this will be the last time.
Ryan's pump getting a saline flush
Here’s how it will go down today. The abdomen will be completely sterilized. Then a syringe will be inserted into the pump and the baclofen will be withdrawn from the reservoir. This is followed by flushing it twice with two syringes of saline solution. The reservoir is then filled with saline and the pump is programmed to run at its minimum “maintenance” rate (just to keep it from seizing up). Done!
Great news! Ryan is a real trooper. Keep up the progress and we look forward to continued good reports!
Praying that all goes well. We know what a strong person Ryan is and how he will beat this also. Thinking of the entire Diviney family ALWAYS.
This is great! I’m sure you will be ever vigilant, he’s lucky to have you as a father. Hugs!
Praying all goes well with the final reduction! Peaceful healing for all of you…
Love, Peggie
Hope all goes well today!
Good luck today Ken – we are all thinking and praying for you and Ryan today!!
Ken, I so deeply admire your determination, courage and tenacity in seeing this through. I know you have spent many hours and days anxiously watching Ryan to see how he would tolerate the reduction. It is clear your faith in Ryan’s strength and resolve is paying off. I admire your bravery and willingness to go where no one has gone before — all with the one goal of helping Ryan move forward.
Bravo, Ken!!! And a bow to your amazing son, wife and daughter too for their courage and determination.
I can’t believe you have accomplished this so quickly!!! It’s awesome!!
Love, hugs, prayers continuing
Paula
God bless…..sending prayers for Ryan!!!
I don’t comment much on here, but I follow every post. This is a milestone day and I just wanted to let you know that there are many people out here “silently” praying for Ryan and your family. Good Luck today! 🙂
Ken,Sending all good thoughts and just know it will work.Thinking of you all and will be here to hear any news on Ryan..GOOD LUCK~ Love Gail
Ryan is ready to shatter the Baclofen barrier! Praying that everything goes smoothly today and throughout the 72-hour adjustment period.
Sending good wishes/vibes/thoughts that the complete weaning-off process goes smoothly for Ryan (and Dad).
I do his speech therapy.
What a blessing you are, Ken!
Ryan’s will + your determination = The Right Stuff
Looking to the future — is Ryan still in speech therapy?
Ken, my first thought was, “What if… …,” but then realized that my job here hasn’t changed in 2 1/2 years. So I began to pray, knowing without a doubt that God hears. With His help, WE GOT THIS!
I know you will keep us informed; we can’t ask for more.
Thinking of you. Love and prayers.
I’m sending good vibes and well wishes today for the entire Diviney family! Looking forward to hearing more good news!