Asthma, I Hate It

Asthma. I hate it.

Heart rate creeps up

Breathing increases

Sats go down

Pulling with arms and legs, 

Using accessory muscles to try to get air into too tight airways

Sweating

Squirming

Gasping

Until....

Albuterol finally kicks in and he collapses,

Exhausted from the effort to breathe,

Sleeping, until the next time.

Me, not so much.

Hovering,

Watching,

Praying,

  Hoping...

Waiting in the ER yesterday, totally
wiped out from working so hard to breathe.

Yeah, that pretty much sums up our week.  It's been a rougher one.  He was actually breathing okay Monday and Tuesday, but cried a lot those nights, too.  Talk about heartbreaking.  Big sad sobs, quivering lips, pained expression.  You know, there's a difference between a mad face and a heartbroken face.  His was heartbroken.

Wednesday at school, he had a pretty bad asthma attack.  It took giving inhaled albuterol twice in 30 minutes to get him out of it.  Talked to the experts, put measures on board, and stayed home.  There really can be some great things about his machines and monitors.  Because we've got them, I've got more leeway to stay home where with another child, we'd have been in the emergency room because it's simply not safe to do so much albuterol without seeing how it's affecting the heart.

Anyway, we did okay.  In fact, Wednesday night, not only was he looking good, but he was happy, too!  Then Thursday, he did it again, in spite of the fact that we were giving albuterol very aggressively.  He got three large breathing treatments in the course of an hour, which meant it was time to throw in the towel.  

Good news is that with those treatments, and one more just before leaving for good measure, I drove him up here instead of taking our golden chariot (ambulance, you know, a ton of gold needed to ride in one of those things!).  But seriously, for those who don't know, albuterol is usually dosed at 2 puffs every 4-6 hours.  Aaron's usual emergency dose is 6 puffs.  We were doing 8.  So on Thursday, he got 32 puffs in the course of 2 hours.  Yep, not maintainable at home.

So we're here, and he's doing much better.  We've changed up some meds (again!) and also looked at ventilator settings.  You know, it IS called the "practice of medicine," and we're practicing on him.  

See, his asthma has gotten worse with the settings we changed him to about a year ago.  BUT the old settings were worse for his heart issues.  So now the plan is to keep him on his newer settings as long as he's doing well.  If he starts to struggle with his asthma, we switch back to his old settings (reset for new body weight).  Thank goodness for his awesome ventilator which will let us switch with the touch of three buttons.  The old one we would have had to go into settings and reset all the different functions.  

We're hoping to go home this afternoon.  There is (as always) lots of bugs and germs up here, and all his tests came back totally negative.  We'd like to leave while they're still that way.  

Breathe. Let go. 

And remind yourself that this very moment 

is the only one you know you have for sure. 

~Oprah Winfrey