Jimmy Moore's Journal
A Batch of (Really) Good News
Written Oct 14, 2013 3:51pmToday was Jimmy's trach change day at The Shepherd Center. We're on a 3-month schedule for this.
Jimmy's trach changes have always been extremely painful. He usually won't even let me write the event on our appointment board in his room so he's not visually reminded of it, although it's always looming in the back of his brain.
So he was bummed today when he got up. But, we went.
Because his respiratory and pulmonary staff realize this, they suggested he go with a smaller size trach. Our only concern was that he wouldn't be able to get secretions up.
They said it wouldn't be that much of a difference, and trach changes would be less traumatic. Also, it will help his quality of speech when his stoma heals down the new size, and they said it would be more comfortable for him overall.
Sounds like a win-win. Doctor's were right. Trach change today was less painful, according to Jimmy.
Since it was our annual check-up with our pulmonoloigist, we decided to check Jimmy's vital capacity. Basically that's his ability to draw a breath on his own.
He got tested with his DPS (Diaphramatic pacer) on and no ventilator. His numbers were off the charts good. The RT staff was impressed. His breaths was really strong.
Next the RT had me turn off his DPS so we could test his breath without the pacer's help. So, this is just Jimmy taking deep breaths. No help.
HE DOUBLED HIS NUMBERS FROM A YEAR AGO.
The doctors and RTs were SHOCKED! They said he wasn't the first patient with a high-injury to show this kind of respiratory improvement, but it was rare.
I've talked about this before, how the DPS can be known to recondition the diaphragm.
Looks like it's happening.
So what does this mean?
First step: The doctor wants Jimmy to completely be off the vent. He kinda is. Has been before. Jimmy sleeps on the vent purely for comfort. The doctor wants him to get comfortable sleeping off the vent completely.
Next: He wants Jimmy to come off the DPS. Jimmy will probably get tired while he gets used to this. This step is a big one. But they think he's drawing a big enough breath that he should be fine.
Then: they want him to come back to the hospital to be monitored for a night or two. They want to watch all of his levels closely.
After that: they will decide if he no longer needs the DPS. And, eventually that could lead to his trach coming out. (!!!)
I never ever thought this was a possibility for us.
I immediately asked about his secretions and having to be suctioned. They say once they get rid of the trach, the secretions will start to go away and when he does have them, there is a way for him to get assistance with his "normal" cough to get up what he needs.
Like, it's possible this respiratory thing wont be a forever thing?! WHAT?
We're always so reserved with good news but this feels like REALLY good news. Like, when I asked about the trach coming out one day I got agreeable nods from the doctor and not a bunch of "maybes" or "slow downs."
This is huge news. However, we've got some work to do. Jimmy is going to have to get used to sleeping off the vent again. He had a hard time with this the last time we tried. They said this time it should be easier since he is stronger.
My husband is the shit.
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.