Later this morning Ryan will be twenty-four hours out from the decrease. He is now at a dosage of 199.7 micrograms (mcg) daily. To me, this is a huge psychological win by breaking the 200 mcg threshold. I wonder what it might feel like to be below 100 mcg?
Ryan appears to be tolerating the reduction… at least so far. Still, he’s not out of the woods just yet. I’ll feel a hell of a lot better when Friday afternoon rolls around.
In the comments of yesterday’s post, It’s Like a Restoration Project, a reader asked what happens with the pump when/if Ryan’s weaned entirely from the baclofen. I have the answer. Or, more accurately, I have the options:
- Immediately surgically remove the pump from his abdomen.
- Drain all baclofen from the pump reservoir and fill with saline solution. Have this saline run at a minimal rate to keep the pump working if baclofen needs re-administered.
Well, here is my plan (at least at first blush): I’ll go with option #2 for several months. Probably half-a-year or longer. If all seems fine at that time then I’ll have it removed entirely. I must proceed with extreme caution not to be too hasty. The worst thing that could happen is to have the pump removed only to need it put back in.
The next question I need answered is, at what point is it safe (and advisable) to stop the medication? I already sent an email out to the International Brain Research Foundation (IBRF) asking just this. Once I hear back from them I’ll see if their recommendation flies with the Brain Surgeon who placed the pump. I’d feel better if they collaborate.
So, what’s next in the short-term (before the end of the year)? Well, one thing that is a certainty is the pump will be refilled on December 28th. It’s not because the reservoir is low, rather it is the effective life of baclofen (six months). This is a simple procedure where they insert a syringe through Ryan’s abdomen into a port in the pump’s reservoir. They remove the old baclofen then inject new. Easy, yes, but this carries great risk if the nurse misses the port and injects baclofen directly into his body. The overdose reaction is quick and becomes a life-or-death situation. Aside from the refill, there is also the opportunity to cut the dosage.
I’ve also tentatively scheduled another reduction for December 12th. It’s crazy, but Ryan might just get two more reductions this year. I hope I’m making the right decision… for Ryan’s sake.[poll id=”59″]
- It’s Like a Restoration Project (ryansrally.org)
Ken, you have to believe you ARE making the right decision with the baclofen. You will never know what’s possible with Ryan unless you do. You’ve taken such great care of him to help his body heal, and the baclofen has protected him along the way. Keep stepping forward with the reductions.
Debbie mccollum says
Ken,Sue,Ryan and Kari—-Happy Thanksgiving, your in our prayers. Ryan is Relevant!! To more than you know!!!!!
The Colangelis says
Good news on Ryan tolerating the reduction. One can understand your concerns on all the decisions you have to make. Trust in God who will help you make the right decision.
Thinking of you and your family, Ken and Sue. I pray that you have a good day tomorrow with your family. Hoping and praying that Ryan will suffer no ill effects from the baclofen reduction. I almost feel like I need an hour-to- hour update, but trusting you in all matters Ryan. Love.
Tell Ryan to keep up the good work of tolerating this reduction. My prayers continue.
I agree with the ladies above, no one would make better decisions for Ryan or think the benefits and consequences through more so then his parents. Progress and success is what we are hopeful for, Ryan is what we are Thankful for! So glad to read he is tolerating the reduction.
My family wishes yours a quiet and uneventful Thanksgiving.
Gail Doyle says
Ken, I’m so glad so far,so good with reducing baclofen. You always seem to make right decisions with Ryan ,as hard as it is ,I’m sure.. Hope his rash and blisters are getting better and hope all have a peaceful Thanksgiving.. Always here Love Gail
So good to hear that Ryan is tolerating the reduction and doing well. I feel down deep that you are on the right track with your decisions. Remain confident Ken. Your instincts will serve you well. Positive thoughts and prayers continue. Love, Peggie