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It’s time again for the weekly update. What can I say, it was another busy week from start to finish. Just like most others, a few surprises popped-up and were dealt with. I suppose it never really ends. Every time it seems like we’re hitting our stride along comes an obstacle. Still, the upcoming week is an exciting one.
- Baclofen. Some twenty-eight months ago Ryan was placed on baclofen, via a surgically implanted pump. The doctor told us this would be implanted for his lifetime. I asked if it’s possible to ever be weaned and he told me in theory it is, but he never heard of it happening. Initially, we hoped it would give relief from neurological “storming” by quieting the brain. It didn’t. Storming is best described as the mind and body in chaos, and Ryan spent up to eighteen hours a day for eight months with violent episodes. Many were life threatening.
Gradually these subsided and the purpose of baclofen changed to relaxing the skeletal muscles so that Ryan’s body would loosen up. About a year into this it was like he had steel rods going through his body. His flexibility was basically non-existent. He was, in effect, stiff as a board from head to toe. I was fighting a losing battle and my goal was to simply slow the contractures. We put him on hyperbaric oxygen treatment (HBOT) therapy, used passive peddling (ActivCycle), and I pushed his range of motion to his maximum. He was so tight that I was pouring sweat as I worked with him. Even something as simple as stretching/massaging a finger would send his pulse up to 150 beats per minute and I would have to wait for it come down before I moved to the next. He was in constant pain and it was hard to watch. Slowly, things started turning around for him and he was gaining range. Now his flexibility is mostly back to normal. There is some residual stiffness left, mainly in his fingers and ankles, but I continue to work on it.
Well, tomorrow we see if Ryan can prove the theory that a person can be weaned from baclofen. His pump will be flushed of the baclofen. If he tolerates it then in three to six months we’ll remove the pump entirely.
- UTI. He has another one. I picked-up on it Wednesday when I did our routine urine dip test and detected a foul odor. We started him on Cipro on Thursday since it has broad coverage. But, I received an email from Dr. Rodriguez overnight that the strain of bacteria he has is not responsive to Cipro so another anitbiotic was called in that we’ll pick-up when the pharmacy opens. The good news (if there really is any) is that it’s a different bacterial strain from the previous one. It’s a catch-22 in that it’s helpful that we can target the different UTI bacterias he gets with various antibiotics (reducing him becoming resistant to an one), but there’s not just one that we can attempt to completely eradicate.
RT300 FES. This therapy equipment is the best! Ryan is taking to it like a champ and he is making noticeable strides. There are many ways to measure his progress, but the one I focus on is how long he can move the peddles (albeit involuntarily) without any help from the motor. This happens at the 30 minute mark following the programmed workout. The first time he used it, one month ago, his muscles tired within twenty seconds. Now? He goes a full thirty minutes (yes, minutes). I’m sure he could even go longer, but the session automatically ends.
So, this week I’ll be working with the equipment’s therapist to increase his workout, probably both in intensity and duration. He now goes six miles with his legs and three-and-a-half with his arms five or six times a week. Just remarkable!
IVC Filter. Ryan visited a vascular doctor last Wednesday to get another opinion on the IVC filter (for protection from blood clots traveling to the heart) placed in his inferior vena cave. The appointment wasn’t as productive as I hoped, but I did learn a few things and layed out the next steps. We specifically identified the IVC model as Celect (although I want to confirm this with an MRI) and it is retrievable.
All along I believe it was a Greenfield filter, because that is what I was told. Turns out, some doctors use “Greenfield” generically. You know, like “Kleenex” for tissues, “Xerox” for photocopies, or “Saran Wrap” for plastic wrap. Ryan will need to get further imaging that is more specific and localized.
Since Ryan is so active, his risk of developing clots in his legs is minimal. The plan is to get this filter out if the images lead us to believe it is safe to do so. I’m told removal is generally a ten minute operation. A scope with a small hook and sleeve is threaded down the jugular. It then grabs the filter’s hook and the sleeve is slide down, collapsing the filter. Then they just pull it up and out. Perhaps this can be coordinated with the removal of the baclofen pump?
- Ryan’s Rally on Pinterest. Yesterday I announced that I set up an account on Pinterest for Ryan’s Rally. If you already use this service or plan on getting an account, please follow Ryan. I’d also appreciate if you would “re-pin” a few items (mainly in the “Follow Us” and “Ryan’s Attackers” boards) that help get his story out to more people (and not allow those responsible from becoming obscure).
- Photo Page Project. Another project — still in progress — is a complete overhaul of the website’s photo page. Because the page is getting so large, I’m moving related pictures into albums. I’ve already created four: The Attackers and Trials, The Woofers, Patio and Landscape Project, and Kitchenette Project. As I create more albums I’ll move the uncategorized photos into them (they are still available just below the albums) and add in new ones. After I get this all to my liking, I’ll add an album called “Recent Uploads” that people can view for any new pictures instead of searching through the albums.
- Radio Interview Uploaded. On Tuesday I uploaded the audio from an interview I did the prior week on WAJR (Morgantown’s flagship station). To listen, just click on the following link, 4-17-12 WAJR Morgantown and the player will open in another window.
p.s. Pinterest sent me an email saying they put me on their “waiting list” so I’ll be one of your “followers” as soon as deem me worthy.
sigh…I know I’m a little slow on the uptake, but — I gotta figure Pinterest out … gad ….I love the site you made for Ryan! What is the best way to draw attention to Ryan’s site? I know Pinterest has become very popular — great find, Ken! I am hoping your blog gets a whole new slew of readers from this.
I am intrigued with the statement the doctor made about most people not going off baclofen. The treatment you’ve been giving Ryan is breaking new ground. It really is an amazing and inspiring thing to watch!
With regard to Jo’s comment about knowing how much exercise is adequate/safe — how does a person know this? I’ve read about a couple instances of people overworking their muscles and something wierd chemically happened. You’d know much more about it than me — I didn’t really understand it.
Hoping you, Ryan and Sue get some patio time today! It looks nicer than I thought it would be. Praying for you all and sending my love as always…Paula
The Colangelis says
The positive news on the increased exercise is phenomenal. I really beleive it will be the best therapy possible and we will see further results in Ryan’s recovery. Bad news Good news on the UTI. Bad news that another one has appeared….Good news that your on top of it and treating it early. Our prayers continue and I beleive God is helping based on all the positve news of late. God Bless you.
Pinning “beware of” for the attackers and those who watched on Pinterest.
I think we stumble upon a new way to use this service. Wonderful!
Gail Doyle says
Ken Thanks for updates and Ryan has come such a long way and he will keep going further I know. Still find it amazing he will be off Baclofen and has no bad effects,let’s get some good ones now! Hope UTI clears up and wish there was something that would keep them from coming back:( Sounds like Ryan is doing great on FES machine and all you do for him ,that is keeping Ryan so flexible and physically healthy. Will wait for more news on filter and pray all works out
Haven’t tried Pinterest ,but will do later, Seems people like the idea. Anything to keep Ryan and what happened to him out there for more and more to see is a real benefit.Have a CALM day and give Ryan a big hug from me
Rita Caporicci Hoop via Facebook says
Ryan has been defying all the odds against him from day one, and we are confident that he will continue to do so because of the phenomenal care he receives from you and Sue, as well as his doctors, nurses and that Great Physician watching over all of you. Love and prayers to conquer each day and obstacle are being sent your way 24/7.
Jo Hobbs via Facebook says
Oh, no! Not another one! So sorry. Hope it clears up in a hurry!As always, prayers.
Thanks for reposting the pinterest link. For some reason yesterday I could not link up with Ryan. Today worked perfect and I created a new board on my page “THUGS,” complete with pictures. Have a great week..should be sunny and warm!!
I love it!
Thanks for the update, Ken. How do you know when enough is enough on the FES? Six miles would be enough for me, I can tell you! LOL I am sure the therapist will have the correct answer to this one.
Hoping for a sunny day and some time outdoors for y’all, but it is still very cloudy over here. C’mon sun!
Love and prayers.
We will analyze the reports. The six miles he does are not “hard” miles. He’s not to the point where he is simulating an incline. He’s basically peddling slightly downhill.