Jimmy Moore's Journal
Written Nov 8, 2012 1:08pmJimmy has officially been off the vent for two weeks now!
The last time he slept with the help of the vent was Wednesday, October 24.
I guess you could say he quit cold turkey. Hasn't gone back.
He seems to be handling it well.
There were some energetic days at the beginning, and then some full on fatigue days to follow. We just take each day as it comes.
Some days are better than others... but that's how it usually goes with anyone, right?
Just a few hiccups here and there...
Yesterday, on the way to counseling, Jimmy started feeling nauseous and told us to get a bag. Before that, he was asking if we were going to be stopping by Dunkin' Donuts, as we sometimes do before therapy because there's one on the way.
I think it's sometimes hard for Jimmy to tell if he's hungry until its too late.
This time, I think some medication was agitating his stomach (his empty stomach) although he had a big breakfast.
Luckily, I had put a jar of peanuts in my purse for a snack for him.
We gave those to him immediately and he started feeling relief.
I got him a donut, too -- just something!
He seemed to feel better.
After our session, on the way home, came the nausea again.
Keep in mind, Jimmy has not once thrown up since his accident (knock on friggin' wood) so this was a little scary.
I had just stopped at Arby's because I knew he needed an actual meal. He told me to quickly give the sandwich to our nurse so she could feed it to him.
Again, semi-instant relief.
Okay. Lesson learned.
Jimmy takes too much medication to go long periods of time without eating, even if he is napping and seems content.
I just woke him up to eat a little something.
He wasn't happy, but begrudgingly ate. He knows he could get sick.
He is a little more sleepy today than the past days.
I happened to be up (not willingly) around 6:30am this morning. I heard Jimmy scream loudly. With his new sleep filter, it's harder for him to talk/make noise so he must have had something going on.
He said his whole body was went into a spasm at once, and his body was cramped. He asked if I could just move him around a little bit, his limbs and muscles.
He was okay after the nurse repositioned him, but had a tough time going back to sleep.
So, I've got a sleepy head over here.
A good time for me to run some errands.
Overall, I think Jimmy is doing well.
Less doctors appointment, which means we're doing things on our own and he's healthy, considering.
This year for the holidays, we're traveling to his parent's house (Thanksgiving) and my parent's house (Christmas). My father from Ohio is always coming to visit us during the holidays. Last year, it was too soon after discharge to try and travel -- not to mention we didn't have transportation.
We're grateful, happy and most days -- feel blessed.
Thank you for your continued support, as always!
This journey could not be made without you... and chocolate.
PS) I've attached a photo we got taken recently, which is silly and cute and us.
Written Oct 26, 2012 11:03amLast night, Jimmy slept off the vent!
We've just hit the 24 hour mark with him off the ventilator.
He still remains on his DPS (diaphragmatic pacer).
He's only done this like one other time.
This time around, Jimmy's a lot stronger and he handled it better. I kept waking up in the middle of the night with my ear in the air, listening for the sound of the vent, but never heard it.
In the morning, I tip-toed out into the living room to get the verdict. The nurse said his oxygen saturation levels were good all morning and night, and that he remained off the vent since last night.
When I took breakfast in, it took him awhile to wake. When he did, I could see he was in a better mood and a little more rested than normal.
He was given a new filter to hook into the outside of his trach that would help with sleeping.
Jimmy said sleeping off the vent with the new filter was... "easy."
Maybe this will motivate him to go off the vent more at night, as we continue in our goal to get him breathing 100% on his own.
This all stems from the news earlier this month that Jimmy seems to be getting diaphragm function back.
Once he completely weans off the vent, the next step will be to start with the weaning of the DPS.
Some Good News
Written Oct 15, 2012 11:14amThis morning Jimmy had an appointment scheduled with his pulmonologist at The Shepherd Center.
He was due to have his trach changed.
Before that, we had his breaths tested.
We turned off his DPS (Diaphragmatic Pacer) to get a true reading.
Jimmy did very well.
When we first tested his breaths off the DPS -- way back when -- his volumes were around 150-300.
Today, off the DPS, just Jimmy breathing by himself -- his volumes were around 800.
That indicates that he could be getting some diaphragm function back.
This is huge.
Jimmy was given the go ahead (again) to start coming off the ventilator at night, as he feels comfortable, and he also has the doctor's okay to slowly start weening off the DPS.
After the good news, came the trach change. It was one of the more rough changes for him. The stoma was smaller and tighter. She had a tough time getting the new one back in.
He had to bite down on a washcloth.
I couldn't watch, but stood behind him, holding his shoulders. I could feel him bracing and then wincing as it all took place.
He did good.
I told him -- at least we got some good news beforehand.
Made the hard part a little more bearable.
He'll be taking it easy the rest of the day, needless to say.