Crazy Thing We Call Life

Working on sitting up, all by himself.

Oh, boy.  Once again, waaaaaaay too long since I've written.  And it's a good thing you can't see the clutter in my brain, 'cause it would scare you.  I write to unravel thoughts, process them, make sense (sorta?) of this crazy thing we call life.

So anyway, no news is good news?  Maybe? 

The powers that be (who is that anyway??) have put in place a new feeding system.  It was supposed to be implemented a couple years ago, but there was the whole "manufacture enough for the whole country/world" complication, and some other things that hadn't been quite thought through at the time.  Now, most of that has been figured out and the rest, well, us special needs moms are pretty much used to improvising and we share our hacks so it's working okay.

Port on the new feeding system

But along with the challenges of getting supplies, etc, comes a really great benefit.  Now our syringes and feeding bags screw into the adaptors instead of just sliding in.  For us, that means I don't have to hold it tight while pushing a med or a feeding, or even better, burping him.  This is HUGE in our house.  It means many fewer "feeding the bed" episodes, or squirting medicine on myself instead of into him. 

And just in case you really think I'm on top of everything and have it all together, let me share a funny with you.  Our old feeding system had two ports:  a larger one for the feedings or large syringes, and a smaller one for meds.  (Those also had a tendency to open at the least opportune moment.)  Because all the syringes now have the exact same tip, we don't really have a need for two ports.  That's the back story:

Shake it up, baby!

We got our new extension and started using it.  I thought it was fun how they had put "feed me" on the part that the syringe or feeding bag screws into.  It made me smile whenever I saw it, or even thought about it.  I mean, it's such a little thing, but why not?  About a week into the process, I looked a little closer.  It didn't say "feed me."  It said "feed, med" you know, in case anyone wondered what to place there.  I guess it makes sense.  Before we used different ports for food and meds.  So now, instead of being amused by a touch of whimsy, I'm shaking my head and laughing at myself for my lack of observation.

8 pm meds

But Aaron is doing pretty well.  Utah is mastering the whole bipolar weather thing which is always a challenge for him, so he's been getting breathing treatments fairly often.  All week we gave him albuterol every four hours, and we're tapering back to ever six hours this weekend.  So far, so good. 

Evenings are always crazy busy around here.  Because I'm working, I try to do all his prep work at night.  I was thinking about how this really shouldn't be taking so long to get everything done, and then I started looking at exactly what has to happen.

Prepping up his heart med

He gets a shake vest treatment every morning (with his nurse) and every evening with me. 

After that, we do two MDI inhalers and a nebulizer, along with a nasal spray.  He also gets a feeding and six medications or supplements in the evening. 

Ultimate Green Smoothie!

His nebulized medication doesn't have preservatives in it and it comes in glass vials.  Every night, I draw up the next day's doses.  That involves gloves, breaking of vials and filtered needles.  It doesn't take long, but it still...

Our silly boy getting his inhaled heart med.

Then there's his food.  He is doing so much better! on his blended diet.  Again, not a big problem, but it does take time.  The kids are great at helping.  All I have to do is ask them to grab me his things from the cupboard or the fridge in the garage and they know exactly what to get.  All in all, it's less time than the meals for the rest of the family, (think they might go for the all liquid diet thing?) but again, it takes time. 

And there's Aaron himself.  Not only do we need to do his trach and g-tube cares where we clean the sites and make sure they're doing well, but he seems to think it's fun to set off alarms, pulse/ox or ventilator, it doesn't really matter.  He's usually just fine, no issue at all, but we always have to check. 

So there's a whole lot that goes into our evening routines here.  Throw in a soccer game or practice, another activity, kids being run to and fro, and well, I'm afraid you can see how I misread "feed, meds" into "feed me."  But seriously, wouldn't "feed me" be a whole lot more fun? 

Our mountain. 90* one day, snow more than
halfway down the next.  Crazy!

 

 "If being crazy means living life as if it matters, then I don't mind being completely insane."

Kate Winslet