This is Eli

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

Eli earned a new nickname this week:


He did the best he could to boss everyone in his world, everyone trying to mess with him.

He is 38 pounds of piss and vinegar.

He’s a boss.

Want to take the piss out of him? (Literally)?

Naw, he ain’t havin it.

Need a drop of blood?

Yeah, sure, ya want a knuckle sandwich first?

To alleviate our boredom as a hospital stay stretched on, I blew up hospital gloves and turned them into weird, blue people, like Hand Baby, who became Eli’s hospital Wilson.

Except Eli punched the shit out of hand baby, not to mention hand baby’s ill-fated dad, Dad Hand.

Next, Eli potty trained hand baby, like a boss.

We could all learn a thing or two from Eli. He knows how he feels and he’s not afraid to let you know how he feels.

Of course, at 3, he doesn’t understand people trying to take things from him and hurt him are actually trying to keep him well.

That’s where Mark and me come in. We let those people do the things to him they need to do to keep him well, completely against the wishes of my little big boss.

It’s heartbreaking. I betrayed my son roughly 204 times in our thus far short 5-day battle to get his lungs working right, holding him down procedure after procedure, through his protests of thrashes and screams and “I HATE YOU”s.

His preferred emphasis word is “really,” as in “REALLY,” as in “This REALLY REALLY REALLY hurts,” and “I REALLY REALLY WANT TO GO HOME.”

We know more now about what happened this week to Eli’s body, when he stopped breathing right and his tum and neck sucked in to squeeze more oxygen into his blood and his heartrate spiked. We know thanks to a sputum sample that entailed a team of doctors and nurses and me holding him down while they stuck a tube through his nose and down his throat and scraped out some junk, to tot protests so loud that they were surely heard around the world.

A few days later that junk had a name; the blossoming outbreak of a common cystic fibrosis bacteria currently fucking with my son is Haemophilus influenzae. 

It’s a little more complicated than that, though. He had a trifecta of viruses in him, including RSV, entero and rhino viruses. Those viruses made the Haemohilus influenzae bacteria stuck in his lungs because of the CF jazz on up. He had a “CF exacerbation,” a clinical term that essentially means bad chronic bronchitis.

That much we know and today, after five days of pumping oxygen and antibiotics, Eli was well enough to go home.

He had a PICC line placed and needs antibiotics for roughly 10 more days at home.

It doesn’t mean he’s over it, all of this, all of these people messing with him.

After ignoring his demands all week for the sake of his health, he made a final plea as we left the hospital and drove by a fire truck.

“STOP!” he commanded.


He went on and on.


And for the fir st time all week, I did what he said. I did him one better.

I went to the goddamn fire station 1 downtown with Eli still in his tiger-emblazoned hospital scrubs.

I had to do what the boss said, didn’t I?

Yeah – I DID.

Ok, buddy, here we are. Wanna get out of the car?

He went shy on me.

Come on, sweetie, let’s go look at the ladder truck.

Me with my no-makeup/hair askew/inexplicable active wear (had I not just had like three scones in 12 hours while sitting on my ass?) got Eli out of the car and we walked over to Fire Station 1 in downtown OKC.

The fireman tried to coax Eli into sitting inside the truck, but my son was so shocked that we were at the actual firestation he had  practically gone catatonic. We checked things out for about five minutes and the nice firefighter brought over two sticker badges, one for him, one for sister.

I put Eli back in the car.

He noticed a glass factory across the street.

He wanted to go there now.


No, sweetie, we have to go home now.

Eli next screamed “NO” for 20 straight minutes, along with “TURN AROUND” and “I HATE YOU.”

He had some residual rage from his hospital stay, from his frustration with people messing with him, doing everything he told them not to. That’s my theory, any way.

I let him scream. I took him home and let him hit me, roll on the floor and hollar to his heart’s content.

“Inconsolable” is the word that comes to mind.

He ran to the door and messed with the locks, so determined was he to get back to the goddamned glass factory.

We distracted him with the prospect of opening a gift that had come in the mail.

Things were better until the home health nurse arrive and we gave him his next dose of antibiotics.

Again, I had to restrain him completely as he screamed and Mark worked the IV flushes and drugs under the supervision of a nurse.

“It won’t hurt, buddy. It’s going to be over soon,” I cooed. “Shhhhh. It’s OK. Shhhh.”

He forgave me, cuddling up afterward.

Since then his smile has returned. We threw him a party with pizza and cake.

He’s smiling again.

Like a boss.


2 thoughts on “Eli: Like a boss

  1. Betsy says:

    I’m so sorry for all you’ve been through with this hospitalization! It makes me so sad to think about Eli sad and upset and it’s my guess it was even harder for you and your husband than for Eli. I love getting glimpses of his personality, and I have to say, I think that feistiness and boss attitidue will serve him well as he gets older and has to deal with his disease. He will be strong and in charge!

    Liked by 1 person

  2. Ruth Deljevic says:

    Thank you for the update. I’m glad he’s home and on the mend. Poor little guy and poor parents! I know we rise the occasion, as required, but these are times you wish you didn’t have to. Take care of yourselves. Hugs

    Liked by 1 person

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