Friday, June 8, 2012

TGIF - YEAH NOT REALLY

Here are several adjectives used to describe Colby lately: awesome, fabulous, looks great, handsome, rock star, kicking butt and/or ass, trooper, strong, fighter, super fantastic just like his mama (my personal favorite), big boy. He really is doing well post trach surgery. I'm not sure he's convinced the trach is such a wise move, but over time I hope he sees the benefits. We did get some poo-poo news, however. Colby's DEXA scan results were -4.1. Normal range is +2 to -2. Colby has always had issues with osteopenia. Most SMA non-weight bearing kids have issues with bone density, fractures, etc. We've informed neurology and also have asked for a consult from endocrinology. If Colby does need to be on a daily calcium/bone-strengthening medication, or if he needs injections 3x or 4x a year, endo would be the group to follow Colby with that. It's not that big of a deal. I'm very thankful that as of today, Colby has never had a bone fracture. But I've been in the pissiest of moods since getting his results. Why I'm not really sure. First of all, I'm not sure this -4.1 is that much worse than his last DEXA scan results. Can't remember offhand his last results. Secondly, this is extremely common in the SMA community for our kiddos, so why would Colby not be affected, too? Guess it's the whole, oh great, just 1 more damn thing to worry about mentality. Colby list of medications and supplements seems to be growing and growing lately. 

Colby did well with his windows yesterday. He came off the vent 5 different times for a total of about 4.5 hours. He has already had a 1-hour window today also. When I get back to his room, we'll try another. He had a pressure sore on his left ear last week. He hasn't had one of those in years, literally. My guess is somehow his ear got pinched and formed a blister. Well anyways, it looks 100% better now. Calmoseptine is the bomb, baby.  Colby looks so darn cute today in his black gym shorts and Indiana University Athletics shirt. Also going to try and sit him up in his chair later. Yes, will use the lift!

So I need to snap out of this foul mood I'm in. Hit me last night I haven't been able to shake it. Yeah, gee, I wonder why. Guess it has nothing to do with being in a hospital for the last 20 days or so. It's hard being in a hospital when your kid is really sick. It's also hard being in a hospital when your kid isn't so sick. My eyes are on fire. I've been wearing my glasses all day, which I never do. The air is so dry in Colby's room, I'm constantly putting in eye drops. Plus I'm bored out of my freakin' mind. Finished reading the Old Testament last night. I have a 1-year Bible where you're supposed to do readings from the Old Testament, New Testaments, Psalms and Proverbs daily and be done reading the Bible in 1 year. Yeah well, it's only taken me 2 years, 6 months and 8 days to get through the Old Testament only, but by golly I did it! Not in any hurry to start the New Testament, though. Think I'll read the 3rd Hunger Games book first, lol.

I'll do my CPR training today, that'll kill some time. Then I'll need to do my 24-hour stay with Colby. That's where I completely take care of Colby, give him meds, feed him, do his respiratory treatments, change him, etc. Think I'll be able to handle that, haha. They let you divide it up into two 12-hour shifts if you want. I'm going to see if they'll let me do 7 p.m. tonight to 7 a.m. tomorrow morning. Once my 24-hour stay is done, I think my trach training/education will be complete. The real challenge lies in getting Colby's dad up here to finish his. He's coming up Saturday night to do training, spending the night, doing more training Sunday morning. He's going to have to switch gears and get it done so we can go HOME for a few days before Colby's procedures on June 22 (BTT-bronch, teeth, testicles).

Well, I've yammered on long enough. More later.

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