Here we go again. Another drug reduction is happening later this morning. Sure, I’m excited to see if anything positive comes of it, but I’ll be a nervous wreck for the next few days. By now I’m sure you all know the drill and I know I’m being redundant. It just helps to write about it. It takes the edge off. It let’s me visualize my thoughts (and, for once, it doesn’t involve buxom women).
So, for a brief recap…
- Ryan began the year receiving 425 micrograms (mcg) daily (or 17.7/hour).
- This will be Ryan’s sixth reduction in just 10-1/2 months, with five of these coming since June.
- He is currently at a rate of 225 mcg.
- He will be taken to around 200 mcg today (8.3/hour). A 12.1% incremental reduction.
- This will be a 53% absolute reduction since the beginning of the year.
- If all goes well, I plan on keeping with this aggressive schedule and doing another reduction in December (likely around 180 mcg).
An image similar to Ryan's current g-tube.
My goal is for Ryan to eventually be free of baclofen altogether. Or, maybe to the point where it’s so low that he can get it through his g-tube, and crossing the blood-brain barrier is less of a concern.
Speaking of his g-tube, I had Sue order a different, low-profile style. He now has one that is a single piece, with the feeding tube attached to the flange (see picture on right). We went with what’s called a “Mic-Key”. It is nothing more than what is referred to as a “button” (see photo on left). From there, a removable tube is added when Ryan needs food, water, or medications. I see it as having several advantages, but two I felt were most important
The type of G-tube ordered.
were the elimination of clogging and greatly reducing risk of injury when exercising him (I need not worry about the tube being pulled on or out).
As you look at the photo (left), the bubble is inflated (through the side port) with distilled water after it is passed through the abdomen wall. This inflation holds it in place. The only part outside his body is the flange/button and side port. Making this change to a new g-tube is an easy procedure and I’ve done this a few times in the past. The primary concern is keeping the incision from closing over, so it must be quick.
I swear, in many ways this feels like a restoration project. You know, I suppose it is just that…
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Good luck with the next basclofen drug reduction. Our thoughts and prayers are with you and Ryan.
As you reduce the baclofen my prayers increase.
Kristin, Thank you for sharing your story. Looking forward to seeing your students become our leaders for tomorrow.
Ken, Sue and Kari, out of this horrible, horrible situation…Ryan and his story are touching many lives in so many positive ways, which could have never have imagined. I hope you can find some comfort in that. Please give Ryan a big hug for me and keep fighting the good fight! Praying this latest Baclfen reduction goes well.
Love always in my heart for all of the Divineys, Peggie
Hello, I’m a high school teacher near Morgantown, WV. This year we’ve made great strides in our school to update our teaching styles to the 21st century. A big part of that is the assessment that we give our students. We teach every lesson or PBL as we call them with the goal of having our students make an application of their knowledge to the real world. The last lesson we taught was on Ancient Persia and Cyrus the Great. The big idea that the students were able to pull out of this was the first real establishment of human rights. Their real world application was that even though human rights were established in ancient times, they are still an issue today. The issue that the students found was that human rights are stripped from people still. The closest thing that they could relate to was bullying, both physical and emotional. Thus, their final project was to create an effective anti bullying program and pitch it to our county/state. While searching for ideas, a group of my students came across your blog and Ryan’s story. They were moved to say the least. They viewed what to Ryan as testiment to the fact that bullying, physical in Ryan’s case, happens to all types of people at various ages. They rested on the fact that those involved in Ryan’s attack had no respect for human rights. The program that they pitched centered on the fact that no one should have to endure what Ryan and your family has had to endure as a result of bullying. The began with a slideshow they created using pictures from your blog, which I must say brought tears to the majority of the students. The message that they brought was powerful. Their final statement was that they felt there should be a law created to punish those that inflict harm on others, just as happened to Ryan. They titled their bill Ryan’s Rule. The reason I’m telling you this is because I want you to know that Ryan is still touching lives! I’m not sure that my student’s idea will develop into anything more than idea, but the awareness that it brought to my student’s was amazing! My student’s are now close followers of Ryan’s blog and we are rallying for ryan in the halls of North Marion High School! Thanks for sharing your story and thank you for touching the lives of my students! Prayers for you and your family and for Ryan’s full recovery!
Oh great Kristin! I hope the students will think about Ryan before engaging in any type of fighting.
Would you have the baclofen pump removed immediately once he’s taken off of the medication or leave it in for precaution’s sake (i.e. should he need the occasional small dose)?
If Ryan could be entirely weaned, I’d leave the pump in for 6 months or so. It would be filled with saline and run at a minimal rate just to keep it operational.
Ken,Waiting with you in hopes all goes well with reduction. The new G tube looks and sounds much better and like Jo said Ryan is getting the BEST care possible…. You all are a very special family and Ryan will definitely progress … give him a big hug and have a peaceful day. love Gail
Wow, Ken. I’m sitting here marveling at your knowledge about all these things. You are the smarty pants, not us lol.
I am holding Ryan close to my heart and praying that he will continue to do well with the baclofen reductions. Please keep us posted because we’re all excited/nervous to see how Ryan does.
What a great Dad you are; what a wonderful family you have. All of you are a blessing to us.
Love & prayers and still believing
Paula
Love you, Divineys! Need to come by and see Ryan soon. Give Ryan a hug from us.
Hope and pray that all goes well with the baclofen reduction today. We can only imagine how scary this must be, Ken, knowing from the past what can happen. You are so tuned in to any change in Ryan–what a gift! Thank you for keeping us tuned in, too. Ryan is getting the medical care that many of us can only dream of, and the future is looking dim, considering our shortage of physicians, nurses and those in other medical professions. You are the greatest, Supernurse! Love, hope, faith and prayers for Ryan’s complete restoration that is happening now, thank you God.
The anticipation must be almost unbearable for you. As long as there are no adverse effects, keep those reductions coming! I truly believe you are on the righ track with Ryan and will begin seeing signs of more awareness as time progresses. The new g-tube looks like it will be much more comfortable for him too.
So in your opinion it would be better NOT to have the Baclofen pump?
No, I can’t say that. It was necessary and still might be. I won’t know until I find an equilibrium. Obviously, I hope Ryan doesn’t need it.