Wednesday, July 23, 2014

Yea for Simple Fixes (We Hope)

1500 Days!!!!
Yeah, I know it's been a while, and yeah, I know this is going to be short on pictures.  But bear with me.  'Cause the other option is that there may never be another post done.  Just the way life is going right now.

Both Aaron and I have had some health challenges the last couple of weeks.  But maybe, just maybe we have fixes for both of us.  And fixes that won't involve multiple studies, hospital visits, and so on.  Yeah, we don't get too many of those, especially with Aaron.

He's been struggling with his oxygen.  Yes, again (still? always??).  Not huge amounts.  Just enough and frequently enough to make me sit up and take notice.  And then we've also been using his rescue inhaler for his asthma, quite a few times in fact.  So I got to thinking about what's been happening.

Some background, he uses two different asthma inhalers.  One is his rescue med, his albuterol.  We use that when we're in trouble.  The other is his controller, or his maintenance med, his Advair.  My understanding is that one comes in two different doses.  Aaron's is the highest.  And he gets two puffs twice a day.  That is A LOT!!!  So the pulmo wanted us to try to wean him down a bit, and I was all for it.  Two weeks ago we went to one puff in the morning and two in the evening.  Apparently it took a little while to catch up with him.  By Tuesday though, he was trying to get his message through loud and clear.

I had told Andrew and Michael we'd go play at Seven Peaks on Tuesday and arranged for a nurse to come in.  But by that morning, I wasn't leaving, or at least going very far.  He was just needing too much oxygen and too much rescue on Monday.  But after talking to our trach whisperer, we put him back on his two puffs twice a day and also added in his albuterol on a schedule for the next two days.  Guess what?  It worked!  My high maintenance baby wants to make sure he stays that way.  And what this kid wants, this kid gets.

These two cuties have been hanging around our yard
the past few days.  Kinda nice as they're helping trim
the grass that we can't get 'cause the string trimmer
broke, again.  Simple fix, maybe?
Then there's me.  Two and a half weeks ago we were without a nurse for the night.  So I threw a mattress on the floor to try to catch some catnaps between his meds and stuff.  One of the times I got up, the room went completely off kilter.  I mean, I don't think I could have crawled if I needed to.  That was the worst time, but I've had four to six spells per day since then.  Not a lot of fun.  I was seen today by an ENT who's fairly certain it's some loose crystals in my inner ear.  He did a few tests and they were fine.  I didn't realize he was testing just the right ear.  Then he repeated them the other direction.  Hold on!  Literally.  I mean, the table didn't move, but I felt like I was going to fall off it.  So he moved my head around a bit and I think, I hope, we may have had some success.  I get to sleep somewhat sitting up for the next several days and then go back next week.  If it's all resolved, great!  If not, well, I guess we get to cross that bridge later.

But again, here's hoping it's the simple things.  Aaron's oxygen needs stay where they're supposed to, and the earth stays spinning the way it's supposed to, and not off it's axel like I think it's been.  That would be really nice.

By the way, Michael just asked me how many days Aaron has been alive:  1500 today!!

Everything should be made as simple as possible, but not simpler. 
~Albert Einstein

1 comment:

  1. Happy 1500-day birthday, sweet boy!

    And here's to hoping those quick fixes make a big difference. Stay there, ground. You're not allowed to move.