Just before noon yesterday, Ryan had his incrementally reduced for the last time this year. Baclofen is a skeletal muscle relaxer that, in Ryan’s case, is delivered via an internally placed pump. I’m still amazed he began the year at 425 mcg daily (17.7 mcg/hr) and now is at 155 mcg daily (6.5 mcg/hr). A 63.5% reduction! Crazy good! If all goes well this time, we’ll have the opportunity to cut it again on January 12th. I suspect I’ll shoot for 135 or 140 mcg.
He appears to be tolerating this latest reduction well. There were no obvious negative signs neither yesterday afternoon nor overnight. In fact, he seems quite comfortable early this morning. I’ll be interested to see how he responds to his stretching and standing.
Ryan gets baclofen refilled
Baclofen tends to deteriorate over time once in the pump’s reservoir. For this very reason, we have Ryan’s completely drained and replaced every six months. This happened yesterday. Although it is a routine procedure, doing it incorrectly carries high risk. Namely, overdosing. There are several ways, during the refill process, to make sure this isn’t happening and I watch them closely. But, like everything, nothing is certain.
If the syringe needle misses the port to the reservoir and is injected directly into the abdomen the results are often swift and deadly. We are past the point when this would happen… thank goodness. I wish I could say I didn’t lose sleep over monitoring him throughout the night for any negative signs.
It’s my intention to stay aggressive with future reductions. That is, until the point where Ryan is showing discomfort or he is completely weaned. Weaning is such a slow process! A realistic goal is to have Ryan below 100 mcg by this time next year (a 35% reduction). The ultimate goal is zero.
Don’t forget to visit the Chick Magnet Article today and share it!
molly says
December 31, 2011 at 10:39 PMKen, that is great that Ryan has thus far tolerated all the baclofen reductions! I saw something last week about a young man named Sam Goddard who was in a vegetative state, but ambien gave him the ability to speak, apparently there have been a few ‘comatose’ people who have benefit from it. MD’s have no explanation, but there are some studies being conducted. They said that it is effective in 10% of people. I don’t know if that is something you could try with Ryan or not. Thinking of you all,
Molly
Anna says
December 29, 2011 at 2:57 PMGreat news all around! Medication reduction going well, Kari on the upswing in time to maybe go out for New Years Eve???, and the article maybe in the finals! We have been on board with the article so count us in if we are still needed in the next step.
Will says
December 29, 2011 at 12:24 PMThese reductions show that Ryan is healing. My prayers continue for Ryan’s healing and for his family.
Gail Doyle says
December 29, 2011 at 11:04 AMKen, That is such a huge reduction in one year and hoping Ryan accepts it like all the others. Wonderful……Glad to hear Kari is feeling much better and that no one else gets flu. Give Ryan a big hug and Ken and Sue keep up the most amazing rehab any one has ever gotten..You’re the best Love Gail
Christa says
December 29, 2011 at 10:57 AMKen, are there any updates on the progress of the Chick Magnet article?
ryansrally.org says
December 29, 2011 at 12:02 PMI’m only indirectly involved (promoting it) and haven’t heard any updates from the author.
ToMG. says
December 29, 2011 at 12:51 PMKen,
Just got word that we may be selected as a finalist. We have some paperwork to fill out. Check your e-mail! Woopie!
Jo says
December 29, 2011 at 10:04 AMThis is really good news — makes us so happiful (thanks, Carla — love this word!)! I hope you have had a few minutes to enjoy the sunrises/sets, Ken. I must say that they have been a perfect example of when good things happen to bad pollution! I hope you read my description of the “happening,” Winter Rainbow, on Tuesday. It was truly a phenomenom. I don’t know if Ashburn witnessed this beautiful rainbow and golden sunset. I am such a sky-watcher — day and night. Stewart says if Jesus returns while I’m still alive, I will be the first to see Him! I’ll keep you posted. Meanwhile, Folks, love one another as He commanded. I love Ken’s and your posts! Love to all.
Jenn says
December 29, 2011 at 9:06 AMGood Job!! How is Kari doing?
ryansrally.org says
December 29, 2011 at 9:34 AMShe turned the corner yesterday and is much improved.
Sandy Martin says
December 29, 2011 at 8:45 AMGreat news! shsp