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.
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?