Smoke gets in your eyes. And lungs.

I don’t know how I did it for so many months this time last year but squirting saline into and suctioning out my kiddo’s nose followed by a chaser of meds and lung-opening inhalers before the real wrestling begins as I plaster tape across his cheeks to keep him from pulling the oxygen cannula off before bed really, really sucks.

We had three hours of much needed socializing at the Campbell’s barbecue and memorial for our friend Chris Hondros Saturday, and I tried to keep Raphael far from the open backyard fire pit, but his lungs revolted and no one in our room slept as he gasped for air and cried his heart out the rest of the night.

We gave Raphael his lung-opening rescue meds (Xopenex, which supposedly produces fewer jitters than straight up Albuterol) three times by 8 a.m. Good thing we secretly kept a can of O2 in the garage after Apria Home Healthcare picked up his remaining oxygen supply months ago. The canned air helped my boy finally sleep a little that morning and the next night, too.

Elijah noticed the Tender Grips (those circular Band-Aid-like stickers that keep nasal tubing in place) and red marks from the adhesive on his brother’s face Sunday morning and said, “I don’t like Raphael being on oxygen.”

Me neither. In fact, I’m pissed.

Poor kid.

Today Raphael’s pulmonologist put him back on a short course of oral steroids (after congratulating us for stealing the oxygen). Raphael is breathing smoothly now as he sleeps so hopefully this will pass soon.

But it brings up a lot of old anguish and fear I could do without at a time that’s already extra challenging. It reminds me where we were not too long ago and how new trials just don’t stop coming. It reminds me that I can’t really breathe, either.

There is too much going on with trying to get Raphael used to a new caregiver who isn’t working out, to keep myself free from work without completely losing my job, to heal my wrenched neck from the car accident the week before last, and to just keep my house and family functioning.

I feel like I’m living in a smoky haze. Like I’m one drink before drunk and disoriented half the time. My elephant memory keeps forgetting stuff. I missed my best friend’s son’s and my own nephew’s fifth birthday. It’s hard to turn off the noise in my head and drift into slumber when I finally lie down in the wee hours of the morning. I’m making silly little mistakes like a pregnant lady whose brain cells are being commandeered by a seemingly alien force.

I need some air.

Oh and wouldn’t you know, just as I finish this post to head up for precious few hours of rest, I hear renewed coughing from our bedroom? Seriously, that’s ALWAYS the way. Oh, what’s in store next?

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About elizamom

Colorado mother of two small boys. One happens to have Down syndrome.
This entry was posted in Parenting Special Needs, Reactive airway, Stress and tagged , , . Bookmark the permalink.

2 Responses to Smoke gets in your eyes. And lungs.

  1. Jeanne says:

    Oh boy. Hang in there! That’s what I’m telling myself as I am doing my best to hold things together here. Incessant beeping of a smoke detector that needs its battery changed (I’ve tried – can’t get it to stop beeping) is about to drive me crazier than I already am. John is out of town, so will have to endure another night of beeps. As I look around at all the work I have to do AFTER kids fed, bathed and in bed — I wonder if I should just not plan to sleep tonight. Humm. It’s been awhile since I pulled an all-nighter. On second thought, not a good idea considering I’d be listening to that annoying beep in the wee hours of the morning. Definitely not a good idea.

    Thinking of you all!

    xoxo,
    Jeanne

  2. Pingback: A weekend to remember? | The Upside

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