Jimmy Moore's Journal
2-Year Status Report
Written Aug 22, 2013 8:14pmWe're just past the two-year post-injury mark so I thought I'd update everyone with where we are.
*We have moved to Decatur, GA -- just a few, short miles away from Atlanta. There's a little more space for Jimmy to get around in his wheelchair and we are walking/rolling distance from the downtown area; shops, restaurants, etc. And, the taxes and gas prices aren't so high. Yay!
*We still go to the Shepherd Center a couple times per month for routine doctor's appointments and peer support. It's still feels so good to be there and two years later, so many people still remember and love Jimmy.
*Jimmy doesn't use the ventilator at all during the day. He sleeps on it at night to help get some good rest. We battled fatigue for far too long and are happy to report Jimmy has energy again during the day. We think using the ventilator at night to rest has helped, so that is what we'll continue to do.
*Over the last 6 months, Jimmy has come off two of the medications he's been on since the accident. Two less medications! We'll take it.
*Jimmy has gotten to a healthy weight. He lost a lot of weight after the accident, then gained a lot. He's somewhere in the middle of the high and the low following the accident.
*Jimmy has not regained any movement back at this point. He still can do a good shoulder shrug, feel some coldness in his legs and feel some pressure on his bottom. He continues to have muscle spasms which is very common with this injury. His legs will move all around -- involuntarily -- randomly. Many think he is doing the moving, but he is not. Don't worry: if he moves something with his mind, you all will know probably within the hour. This is still a possibility. You just never know. It is encouraging, though, that he gets these spasms in his legs, etc. It keeps him moving and probably helps a little with circulation.
* Jimmy gets range of motion twice a day from his nurses and aides. He does not do physical therapy or occupational therapy at this time. Until he moves something with his mind, there's not much rehab to be doing. With that said, if he moves so much as a pinky, we'll be at Shepherd rehabbing it most-likely.
*Jimmy's respiratory needs haven't changed much. He still needs suctioned several times a day. That's because he still needs help coughing up the gunk in his lungs. He can't command his stomach muscles to help push it all up. That's where the suctioning comes in. When we travel or go anywhere, finding a power outlet is a priority. He is still pacing (with his diaphragm pacer) 24-hours a day. If you'll recall, this amazing piece of technology helped Jimmy wean off the ventilator. Jimmy's pulmonologist believes the DPS (diaphragmatic pacing system) has revived his diaphragm a bit, which is wasn't really being used much before Jimmy got the pacer. That was great news to get. Jimmy still has a trach, which is how we suction him. He will keep that as along as he needs help getting his secretions up.
*Jimmy's head wound continues to heal, believe it or not. Many forget about that because it was secondary to the spinal cord injury. No cause for concern according to doctors, but it still has a way to go and we have no idea what it will look like when it's done.
*Jimmy still uses his sip-and-puff straw to drive his wheelchair around. He's gotten very good at it. He still does his "weight shifts" every 30 minutes or so. That's where he tilts all the way back to resume blood flow on his bottom to prevent pressure sores.
*Jimmy is on his phone a whole lot, which thrills me. He's gotten very good at using his mouth stick. If you ever get a text from Jimmy, that's how he's doing it. It's fascinating.
*For the first time since the accident, we were called to help peer support a young SCI patient with a similar (high-level) injury to Jimmy's. His name is JD and he's 22. He's from Little Rock. It was pretty amazing and emotional going back up the 5th floor at The Shepherd Center to meet him. Jimmy shared some encouraging words to his fellow SCI'er, while I spent some time talking to his mother, Jacki, a rockstar who is doing everything in her living power to help her son through this. It may not feel like it to her, but it is enough.
Jimmy still needs love and support so I thank you to all who have been sharing that with him.
Pressure Sore Follow-Up
Written Jun 27, 2013 10:12amWe got some good news after our visit to The Shepherd Center yesterday for what we thought was a pressure sore on Jimmy's bottom.
Turns out it's more superficial and could be from bed shearing, as opposed to pressure from a bone underneath (much more serious).
No bed rest needed -- something Jimmy was seriously stressing.
We will need to clean and watch the area closely.
Good news. Jimmy doesn't have to stay in bed!
A huge relief after a scary couple of days.
Jimmy's Beach Bum
Written Jun 24, 2013 6:53pm
We're just getting back from our yearly beach trip at Edisto Beach, SC.
This year was so so so soooo much easier than last year. Think the path was still there from when we found our way in 2012. We had lots of challenges this year but they were much more doable this time around.
Jimmy got out on the sand a couple times during the week and we even pushed him to the very edge of the surf where the water would splash up on his legs. We used a beach wheelchair again supplied by the local fire department at no cost.
It worked pretty well for the most part.
At the end of the week, we discovered Jimmy has a pressure sore on his bottom -- an all too common, fairly serious issue for folks with paralysis. Jimmy can't feel his bottom to know when he needs to get the pressure off of it for a while.
We don't know if this was from the beach wheelchair (no cushion at all) or from bed shearing during turns (being dragged across the bed instead of properly lifted) or something else. It almost looks like road rash.
Aside from the ride home yesterday, Jimmy has been in bed for the last two and a half days while the site heals. This is our first experience with a pressure soar. I'm proud that we have gone this long without one, but also it was very difficult to learn he had it. It's an urgent matter that can be very scary.
He has a doctors appointment Wednesday so we can get some prescribed treatment guidlines/medications.
Jimmy is pretty bummed (poor word selection?) about having to stay in bed, but I think he understands why he has to do it.
So, we're kind of camping out in his room while this thing heals -- hopefully soon!
Luckily, the pressure sore popped up towards the end of our vacation and not the beginning. We had a good time!
Other than that, no other major changes with Jimmy's health. I know I haven't updated much this year, but with this site -- no news is good news for the most part.
Thanks for continuing to call and check up on Jimmy and for always supporting us.
We continue to adjust to our new life in Atlanta, talk about the future often and where it may take us.
PS) I update my personal blog more often with our going-ons, ups/ downs and screams/shouts.
Here it is http://jaimiereda.blogspot.com/ if you'd like to stop by and say hi.