Nine months ago we got a new nebulizer that was supposed to cut Eli’s breathing treatment time down.
Right now he inhales a medicine called Pulmozyme once a day to bust up some funky stuff his lungs with some science. Pulmozyme is supposed to reduce lung infections by about a third.
The PARI eRapid, straight out the box, worked poorly.
“This piece is more like the e-slow!” we exclaimed.
A Pulmozyme treatment on the alleged “e-Rapid” took a minimum 15 minutes for him to inhale, and as time went on, a half hour or more.
For whatever reason, it took us nine months of suffering through slow treatments to finally take care of the nebulizer issue and call the nebulizer’s maker to request a replacement
That’s when I turned into dragon mom.
The company wanted to send us a cleaning kit and try it out before providing a replacement. The company wanted to convince us its nebulizer’s problems were our fault, not theirs.
After two minutes of going in circles with a customer service rep I cut her off.
“This thing has been the e-Slow since we opened it. Your product has wasted enough of my time. Put a supervisor on please…”
It seemed like I had to say it about three times. Supervisor on. Supervisor on. Supervisor on.
I told the supervisor the same thing: It’s never worked right.
“It’s under a warranty. Send us a new one.”
The supervisor tried the same stunts the customer service rep, but I remained firm.
New one. New one. New one. Warranty. Warranty. Warranty.
Was I in an echo chamber?
We got a new nebulizer.
Thank goodness – this one does what is supposed to do.
It really is rapid like the name claims. It can deliver a whole dose in five minutes or less, not 15 or more like the first model we got.
Two weeks ago, Eli caught his first cold since January, when double whammy viruses sent him to the hospital for five days with a CF exacerbation.
His colds can stick. The virus flare up the bacteria that chill in his lungs all the time because of CF. We put him on an antibiotic after six or seven days of coughing. It’s amoxicillin and he’s been taking it for a little under a week now. He’ll stay on it for 21 days.
He has on hand two additional breathing treatments that are optional. He has a lot going on, so we only try these when he starts to cough.
We have albuterol, the same bronchodilator asthmatics use to open up lung plumbing. Eli doesn’t have asthma, just junky lung tubes. The third breathing treatment we keep around is sodium chloride, which encourages coughing.
This bout with infection, we’re trying out sodium chloride as a breathing treatment for the first time. It’s basically vaped salt water and it makes Eli cough a lot. We tried a 7 percent solution months back that he rejected. Mark and I sucked it in ourselves to see why. It’s like an unwelcome mouthful of ocean. Terrible!
The 3 percent is much more tolerable and Eli was luckily game.
There is no worse phrase on earth than “thick sticky mucus,” but that’s what’s in his lungs and that’s where the bacteria sticks. Without coughing his infections would settle in and go wild.
In conclusion, I’m thankful that I morphed into dragon mom to get what we deserved: A new, working piece of medical equipment.
I’m thankful I refused to waste more of our scant time. With this cold he’s on his vest for 1.5 hours per day, and with three breathing treatments, it’s nearing two hours of care if you include the time it takes to sterilize his equipment. It’s a part-time job on top of everything else we’ve got going on. I’ve got a cold. School has started. The laundry pile is six-feet tall. Etc…
Fellow dragon moms, protect your time from waste. Don’t apologize. Remain firm. Time is precious.