Weekly Update: April 29, 2012

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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.

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  <via http://www.restorative-therapies.com>

  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!

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  <via http://www.cookmedical.com/di/dataSheet.do?id=4355>

  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).