Baclofen Reduction
Yesterday afternoon, around two o’clock, Ryan’s dosage was decreased from 199.7mcg to 175.0mcg. I’m not noticing any negative effects. At least not yet. His night was calm (but pulse was about 15 beats per minute higher than normal). Remember, I begin to breathe a little easier on this when we get past 72 hours.
Potentially positive, Sue and I did notice Ryan was especially reflexive to his feet being touched last night. A light touch on his toes was all it took to get him to withdraw his leg. I’ll watch this to see if it continues, then add different stimuli to other places on his body.
His next reduction is tentatively scheduled for December 28th. Also at this time he will get his medicine reservoir refilled (draining out the old first). Even though there is plenty of baclofen still in the pump, the medicine has a relatively short half-life. We never let it go beyond six months without completely draining and refilling it.
Respiratory
It was my mission yesterday to get Ryan upright in the standing frame. I’m happy to say I was able. He spent two hours at a seventy-degree incline. It was nice to see him up again!
Further, I was aggressive with orally suctioning and even did a deep suctioning at bedtime (Oh, how I hate doing that). On top of these, we gave him nebulizer treatments every four hours to open his airways and break-up secretions. We did multiple chest percussion therapies (i.e., cupping my hands and thumping his chest) until we turned the lights out at eleven o’clock. It worked! At least overnight he coughed very little. I’ll do the same regiment again today.
Kitchenette
John Ronay, the owner of Blue Moon Construction, is genuinely a good guy. Top-notch, really. I can tell (it can’t be faked with me), he cares about Ryan. I can see it in his face and hear it in his words.
Rather than give a quick update today, I’d like to wait until tomorrow — after the project is complete — to give the full run-down.
Electrical & plumbing ready to go.
Related articles
- Baclofen Reduction Successful, So Far (ryansrally.org) 2 weeks ago
- Baclofen Reduction Today (ryansrally.org) 1 month ago
- Baclofen Reduction Scheduled (ryansrally.org) 3 months ago
Not to ignore the post Ken but I’m wondering what we can do for you and your family this year for Christmas?
Thank you. We really don’t need anything. But, whatever you can do for Ryan is appreciated.
Great job opening up the airway to eliminate the coughing. I’m sure Ryan welcomed the restful night.
Amazing how fast the kitchentte project is moving!
YAHOOO!!! Great news. We’ll take every baby step we can get! 🙂
Sounds pretty encouraging, Ken. Still praying for better days ahead!
Thank God things are going well, Ken. You and Sue truly are phenomenal parents.
A bit off topic, but I’m SUPER excited about Ryan’s Karaoke fundraiser at Mediterranean Breeze in Herndon this Saturday! Yes, that’s a plug. Will we be graced with the awesome singing abilities of Ryans dad? I think that would definitely draw a crowd. 🙂
Well stop at nothing for our boy, Ryan!
Stay positive and positive things happen. Keep getting him up and about, no reason for him to stay in bed. My prayers continue for Ryan and his family.
Ken ,So thankful Ryan feels better and you got him on standing frame ..You really are (just as good ) a Dr with the deep suctioning and getting everything to break up. You really amaze me .Thank goodness it helped Ryan to sleep . Hope you and Sue rested too . Thinking Good thoughts about Baclofen reduction . Hope your day goes smoothly. Love Gail
Hello Ken, the therapy you give Ryan is so superior — it would be a wonderful thing if all our loved onees could receive this kind of excellent care….
I am so relieved to hear Ryan is on the mend. I’m sorry you had to do the deep suctioning, I know how you dread having to do it and how much Ryan dislikes it. But, you always do what is best for Ryan, no matter what.
The kitchenette is going to look fantastic! Can’t wait to see the pictures!! And, yes, you can tell when help is coming from the heart rather than obligation. Everyone on Team Diviney has you, Ryan, Sue and Kari in their hearts, and you are in our hearts to stay.
Praying for continued strides in Ryan’s healing, and good health for everyone in your family. Praying also that the baclofen reduction will continue to happen smoothly. Thanks for letting us know about Ryan’s feet responding to being touched — that is awesome!!!
Love, hope, prayers always
Paula
Mega-thrilled to hear all of this great news!… Especially the part about Ryan’s increased responsiveness!!! I also can’t wait to see what the finished kitchenette is going to look like! (Are those Redskins colors on the walls?)
🙂
Yep. Redskins in the therapy area. WVU in his bedroom.
Good you got Ryan up on the frame–you seem to know that he needs this therapy–wrap the blistering toe and keep on standing him up (according to your regimen)! You got this. Ooooh, love that he pulled his foot away when you lightly touched it……i love these wonderful ‘tells.’ Always prayers, thoughts and love, Annie
Ken,
You got this!!!!
WTG!!!!
<3 carla
Yes, we are all breathing a big sigh of relief with you! What an eventful few days/nights you’ve had with Ryan. We are here for your family always, whatever you need. Love, hugs and prayers for a really good day for all 4 of you <3
You are just filled with good news this morning! Although that deep suctioning is a real bitch (we’ve seen the video), it really helps Ryan breath. I was wondering if the standing frame for a short time would also help, and you’ve already done that. 🙂 If Ryan’s toe is looking infected, might want to get it checked for MRSA — it’s all around. 🙁 Happy to hear his night was better, possibly making for better rest for you. Waiting for good news for Baclofen reduction and Ryan’s health.
I hope you had a moment or two to take in that spectacular sunrise. Honestly, I think this one was painted by God’s own hand!
Always here with love and prayers.
breathe 😉
God bless you both for going through the suctioning! I’m glad Ryan rested better last night. Hopefully you and Sue got some rest, too.