This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

I tried really hard to be pathetic.

I poured a glass of wine that was more like 1/3 of the bottle. I got under the thickest, warmest blanket we own in bed and called my sister to cry.

Not my proudest moment, perhaps, but every human has license to be ridiculous now and again.

What set me off was the news that Eli had a plug of goo in his lungs keeping his upper left lobe from fully expanding. It’s called atelectasis, and the official definition is “complete or partial collapse of a lung.”

WTF?

Because the last time I checked he just had a cough. 

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We be coughin and playin

We got test results back from his clinic, including an X-ray, nasal sample for viruses and throat swab to check for bacteria living in his throat, which suggests it is also living in his lungs.

The X-ray showed “appears to suggest” atelectasis, according to his clinic coordinator Debbie. (Hi, Debbie!)

What I’ve gathered is that next, instead of going straight to IVs, we try a new, stronger antibiotic at home (cipro) and do a lot of extra airway clearance since atelectasis can take a long time to clear up – weeks, or months.

He does not have a bad cold virus nor any new alarmingly named bacteria in his lungs.

That was a huge relief, as there are several bacteria strains that can really hurt him. These strains are found in common places, like the faucet, damp piles of leaves – in moldy onions, for Pete’s sake. They will not hurt people with regular lungs, but they could devastate Eli’s ability to breathe.

So if you see me sprinting like an insane person to stop Eli from drinking from a drinking fountain or from jumping in old leaves, now you know why. Pseudomonas is why. B. cepacia is why.

Atelectasis (WTF). That’s a new one for us from cystic fibrosis. I don’t react well when his disease surprises us. I’ve learned you’ve got to let the sadness play itself out.

So there I was, on the phone, tearfully explaining this latest development to a sympathetic ear, when Eli and Laila ripped into the room like a coupla EF5 tornadoes.

Ugh, kids. Can’t you just let mommy be pathetic and ridiculous alone?

“WHO ARE YOU TALKING TO MOMMY? WHY ARE YOU CRYING MOMMY?” demanded my son. “WHY DO YOU HAVE TEARS MOMMY?”

They successfully hijacked the conversation with my sister, who started asking them about what they wanted from Santa. As Laila offered a list, in great detail, Eli body slammed me.

“Buddy – the wine. The wine!”

“Oomph. Eli. Really. No more body slams. OOMPH.”

The interruption curtailed my pity party.

The wine sloshed onto the sheets.

Eli managed to simultaneously shout out Christmas list while slamming me like a 36-pound wrecking ball.

I stifled a laugh. Wait a hot minute….I’m supposed to be in the depths of despair here….

Hey – what’s this…My wine glass …it’s …it’s…half full…

WTF?

It took body slams and a f ew days of perspective on our latest turn with bud’s disease to banish the sadness and bring clarity.

His cough improved after days of breathing treatments and 1.5-two hours of shaking vest. We did as much manual patting per day on the spot giving him trouble, that upper left section of his lung, that we could get away with.

We kept him home from preschool for a week just to get a break from germs.

Mark took three days off in addition to his Thanksgiving break to care for Eli. I’m really glad he could do that. They were both really ready to get back to their routines today. Eli missed school. His classmates missed and worried about him. Mark was slowly, steadily losing his mind (no offense, little buddy!).

Keeping Eli home doesn’t make sense. Let’s face it – germs are everywhere. We live in a big wide world of germs, and I’m not raising Bubble Boy.

We went to fill a liquid version of Cipro and learned from Walgreens it is on backorder until February. WHAT? Working on finding the antibiotic today. (UPDATE: Found)

I hope it works, because it is his fourth round of antibiotics since September when he started hacking.

What if it doesn’t?

I turned that  scenario over in my head. You know, if we have to hospitalize Eli – is that really the worst thing that could happen?

No.

Because modern medicine.

Mark told Eli last night he has a frog in his throat and tadpole in his lung. Eli seemed pleased to envision amphibians stuck in his body.

“That’s why we’ve got to pound on you and you do your medicines,” Mark told him. “We’ve got to get them out of there.”

“OK, Daddy.”

Eli drifted off to sleep vaping albuterol and dreaming of tadpoles.

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