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Brief Kevin update:

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.)

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( 9 comments )
oxymoron02
Jan. 27th, 2010 12:48 am (UTC)
6 months is about what it took Joe to get his sleep study scheduled ... then they had a cancellation and called one day and said "hey, could you come in tonight?" and the rest is history. So from Dr. A referring him to the actual sleep study was more like 2-3 months. I guess plenty of people forget that they scheduled this thing 6 months ago. Worked out in our favor.

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.
oddharmonic
Jan. 27th, 2010 02:47 pm (UTC)
That's about what I'm expecting. Once Kevin gets a little more sleep I think he'll be more agreeable to going back and forth to VA appointments.

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.
oxymoron02
Jan. 27th, 2010 06:03 pm (UTC)
Joe is much the same way, restless leg and all. On top of the brain injury, narcolepsy runs in his family and I think his head injury exacerbated what was already an genetic likelihood.

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.
oddharmonic
Jan. 27th, 2010 07:47 pm (UTC)
Kevin had restless legs before the TBI, it's just much more pronounced (and irritating to him) in the years since the injury.

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.
oxymoron02
Jan. 27th, 2010 10:28 pm (UTC)
When Joe suffered his TBI his doc told us the closest TBI clinic was in Richmond VA. 6 months later, they opened a clinic in Durham. The VA is getting a lot of guys back from Iraq and Afghanistan with TBIs. The availability and quality of their TBI treatment is going up. Joe's TBI chick (I think she's an OT) was seeing him weekly until his PDA died and he couldn't keep track of the appointments and stopped going. :( They gave him the PDA to keep track of appointments and meds. They also gave him a GPS because it doesn't matter how many years he's been going to the Raleigh VA clinic he still can't find his way there without someone navigating.
king_chiron
Jan. 27th, 2010 04:30 am (UTC)
Ugh, having deal with severe insomnia I can empathize. When he's at that point I really do think it's appropriate to put him on Ambien or some other drug for sleep, temporarily to get him back to a sane place where he can deal with issues.

I mean, they can't even do a proper sleep study on him if he's getting that little sleep.
oddharmonic
Jan. 27th, 2010 03:02 pm (UTC)
If anyone could convince him to try Ambien I'd jump on that bandwagon. In a pinch here I have some trazodone he could try for 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.
clemidia
Jan. 27th, 2010 09:48 pm (UTC)
Hey, Melissa--are you still headed for CO?
oddharmonic
Jan. 27th, 2010 10:08 pm (UTC)
No. I am tracking his sleep in detail for the next two weeks, then taking that to the doctor.

When I have a little more money, I'm going to start the process of getting him a sleep study through the VA.
( 9 comments )

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oddharmonic
Melissa, starry-eyed soy-lovin' Expatriated Zulu

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