This is Eli

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

Eli is a family magnet.

The cavalry has arrived again and again since we had him, then learned he’d need surgery to save his life, and care forever to preserve it.

Grandma Chris put her life on hold for weeks to help us.

My two sisters journeyed down to the plains the weekend after Eli had surgery. My older sister, Laura, booked a flight as soon as we learned something was wrong. She is afraid to fly. Deathly afraid to fly.

“I don’t know what to do,” I told her then. “I’m falling apart.”

“I’m coming down there.”

“You hate to fly.”

–insert insane, unintelligible rant about pumpkin spice lattes being to blame for birth defect I obviously caused —

“Stop it. You didn’t do this.”

“You hate to fly.”

“It’s done. Already booked. I’ll be there this weekend. ”

Take-offs and landings terrify her.

The hostess slipped my sister a bottle of wine as she started to cry and told her: “This’ll do the trick.”

Aunt Amy, Uncle Steve, Max and Lucy spread Christmas cheer on the plains.

This weekend, aunties Carrie and Laura arrived.

And they bought Garrett’s popcorn. GARRETT’S POPCORN.

Garrett’s caramel and cheese popcorn mix is the pride of Chicago. Ok, not the pride, but it’s up there, somewhere behind da’85 Bears, but not too far behind. Forget that whole, unsavory Chicago murder capital thing. 500-plus dead bodies? Oh ho hum…They mix cheese and caramel popcorn together! Weee!

Cheese & Caramel from Garrett's.

Cheese & Caramel from Garrett’s.

Laila refers to her aunties as a single entity. Aunties, come here. Aunties, let’s get pancakes! It’s great having extra hands around. She has so many aunts she gets their names wrong and forgets which cousin goes where, but no matter. Her aunties and uncles make Laila happy. They make Eli happy too:

Auntie Carrie and Eli

Auntie Carrie and Eli

Since Mark returned to school I’ve had little time to write.

I’m engaged in a lot of poo bag maintenance, in between feeding bubs II every other hour, trying to play with Laila and keep us from living amidst poo and dirty dishes and from suffocating under a mountain of laundry. It’d be an unfortunate way to go.

poo pump

poo pump

His supplies and care stressed us out at first, but it’s become a regular routine, like this:

“Baby, hand me the stoma paste.

“You had me at stoma paste.”

(Joke credit: Laura M)
(Stoma paste: caulk for poo bags)

We’re happy the surgeons are going to put his guts back together again.

Dealing with his poo bag/poo infusion takes a couple of hours a day, but it’s also made me realize we’ll be able to handle his care for cystic fibrosis without a problem. We could be wrong, but his temporary gut issue seems more maintenance intensive than what he’ll eventually need to treat his cystic fibrosis.

Now, he just gets a bite of applesauce and enzymes for digestion before his meals. Eventually, he’ll need us to tap on his chest and back for a half hour, twice a day. A vest will take over the taps when he’s 2. He’ll also need breathing treatments later on.

When the lung doctor told me what cystic fibrosis care entails – two to three hours of treatments a day, forever, I cried. Forever. Forever. Really, forever? Yes, forever. You can’t cry forever. You just pick your sad sap self up and get it done.

I discovered fear of the care is so far worse than the care itself. Not that we haven’t had our moments.

Now that we’ve gotten into his care routine, I can see how you just make it fit around your life, to the point you hardly notice the extra work. Yes, sticking a tube into my son’s large intestine, suctioning poo out of a stomach bag into a syringe than pumping it back in the aformentioned tube is actually normal now.

Poo does occasionally fly here. But it’s stopped hitting the fan.

Mark squirted his mother in the head with poo while priming a syringe full of it.

Eli and I have appointments with pediatric surgery and the CF clinic on Tuesday.

Wish us luck.

Much love to family. We couldn’t have handled all of this without you.


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