64 hours into the week (from midnight Sunday), Kevin has gotten a total of 4.5 hours sleep and eaten two meals. The bulk of that sleep occurred today after he took a 5-HTP with a meal. At the end of two weeks of data collection, we're going to the family doctor and hoping whatever she refers us to see isn't too expensive.
We could go through VA to get a sleep study, but if our recent experience is any indication it will take at least three months of weekly visits and hoping Dr. Shutup has been reassigned somewhere else. (Dr. Shutup's demeanor during his vesting-in consultation made me think she'd be happier in pathology, bless her heart.)
We could go through VA to get a sleep study, but if our recent experience is any indication it will take at least three months of weekly visits and hoping Dr. Shutup has been reassigned somewhere else. (Dr. Shutup's demeanor during his vesting-in consultation made me think she'd be happier in pathology, bless her heart.)
- Current Mood:
tired
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oddharmonic- Melissa, starry-eyed soy-lovin' Expatriated Zulu
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2 weeks to get the results back, and he got the CPAP same day just by waiting in line at prosthetics. Getting the guy to come set it up took a dogs age, damned contractors. His CPAP is quiet, ugly but quiet.
It would be nice if Kevin's sleep problems can be mostly resolved with a CPAP. He has a lot of limb movement while asleep (and restless legs while awake) and difficulty staying asleep.
The CPAP wasn't a magic fix, but it helps. When he does sleep with it, the quality of his sleep is improved, which improves the quality and quantity of his awake time.
Joe was sleeping a lot when we started this adventure. He was getting 18-20 hrs a day, but he wasn't on a 24 hr cycle so his awake time shifted. It was OK when awake time was most of the kids' after school until bedtime time, but became very tiring when he woke at 1 am and went to bed as the kids were waking for school. It was at that point that I lost my shit at his VA doc. I asked for something to keep him engaged, specifically ritalin as I'm not a doctor. My theory was that if the spirit was willing to engage, the flesh might get out of bed, and I could control when it happened.
The best advice I have is to be persistent. We got what we got because I recognized that we were dealing with a bureaucracy, and I have no objection to being the squeakiest wheel and letting myself lose my shit when I'm stressed and fighting it is easy.
The VA is trying to be on the cutting edge, as much as that is possible, in treating TBIs.
I'd like to find out if carbidopa is an option for Kevin, since it's used for RLS /and/ it helps stop 5-HTP from metabolizing before it reaches the brain. Our mix of regular doctor out-of-pocket and VA is useful for that, because our family doctor knows about our medical background and doesn't talk down to us about medical options. (I know some people like medical things explained in simple terms. I don't need that and am reasonably well-versed in treatment for conditions I am interested in.)
I am glad that the VA is trying to be cutting edge with TBI treatment, that gives me more hope in buckling down and being persistent to get Kevin through the initial hoops to get the referrals within the VA system. Kevin really didn't like the doctor he's assigned, but she generates the referrals and I can be persistent on getting those as long as Kevin goes to the appointments.
I mean, they can't even do a proper sleep study on him if he's getting that little sleep.
He got another 3.5 hours' sleep in the same timeframe as the day before, so he's reasonably pleasant again today. I'm hoping he's able to get at least 4 hours' sleep per 24 for the next several days because it's a lot easier to be around him then.
When I have a little more money, I'm going to start the process of getting him a sleep study through the VA.