Tuesday, December 29, 2015

Sometimes You Gotta Just Laugh...

8 o'clock meds
I live in awe of some of my fellow special needs moms, especially the heart ones.

One sweet little girl has been flown to Mayo twice, had a ton of emergency procedures, and really put her family through the wringer.  Mom mentioned that she's now at 21 doses of medication a week, down from a high of 140.

I thought, Wow!  I mean, really, that's crazy!  And started wondering how many Aaron gets.  So I went and counted.  Now, I'm NOT minimizing what her family has been through.  Truly.  In many, many ways, their journey has been fraught with so much more than ours has.

But when I counted, I started laughing.  Yep. He takes a lot.  This month, he gets 25 doses a day, so 175 doses a week, and that doesn't count his oxygen, which yes, is a drug.

He takes one thyroid medication, two vitamins and two nutritional supplements (coconut oil and probiotics).  He has two heart meds, one allergy med, and a diuretic to keep the fluid from building up too much.  He's on FOUR (4!) asthma meds, one oral (okay, g-tube), two maintenance inhaled meds, and this month, a rescue med that he actually has to take twice a day.  And an inhaled antibiotic to try to keep the bacteria in his lungs from getting out of control (again).  Plus one for acid reflux.  And most of those are given more than once a day.

That's this month.  We're cycling the antibiotic and rescue med every other month.  So next month we get to drop down to 21 doses per day.  Then back again to 25 and so forth.

And that doesn't take into account any other antibiotics, steroids, rescue meds, etc. that he can end up on.

We try to cluster his meds as much as we can around 8 a.m. and 8 p.m.  It does make things easier that way.

Whew, no wonder I get tired, huh?

That's okay.  He's worth it.  And the good news is, most of the time, it doesn't take any brain power to keep it going.  We've got our routines, our patterns.  And as long as everyone plays nice (asthma, pulmonary hypertension, etc) it's all good.

Thank heavens for modern medicine.

In other news, we did our annual candy cane sled races last night.  Andrew has decided Matthew needs a run for his money on the "Grinch sled."

And while one-armed typing is very slow, it seems to be helping a little bit with my elbow.  It's still pretty painful, and they physical therapist is beginning to think I've plateaued, at least it doesn't wake me anymore at night.  Plus, since getting my thoughts out is a whole lot slower this way, hopefully it means they're a touch more coherent.   One can always hope, right?

.Life is either a daring adventure or nothing.
Helen Keller

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