This is Eli

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

“You know what took the longest? The circumcision. Yeah, an hour and a half. They had to order bigger instruments.”

That is my husband talking on the phone in the waiting room with his sister.

“No, I’m serious. Huge.

He puts his hand over his cell and loud-whispers the following:

“Hey Ju I’m going to walk over there by that family and talk up his circumcision.”

“Yeah, pretty sure the whole waiting room has already heard you babe. Not. Necessary. ”

So that’s my husband, inventing a story that entails Edward Scissorhands-esque instruments to clip his son’s man parts. Mark likes to, shall we say, spin yarns for family members who *almost* never believe him. He also likes telling these “jokes” to strangers. Except in those cases he’s the only one in on it. People usually stare at him in silence. God help Laila when she’s a teenager.

So I turn up the volume to the “Spider Man” episode Laila and I are watching and roll my eyes.

On cue:

“OMG babe.”

So that’s our routine and that’s our 1-2 and that’s how we pass the time while Dr. Tuggle cuts open Eli’s belly and sticks his intestinal ends back together again. We also had him circumcise Eli. That at least was true.

Mark was hopefully entertaining the family next to us with his invented story of giant baby man parts. Their kid might have neuroblastoma, a really crappy type of cancer of the nervous system. They needed something to distract them, I’m sure.

Mark next took Laila home for a while. She was a dream child all day, but the abundance of flu and colds had me send her away.

Eli before surgery

I opened up “O” Magazine, which provided obvious tips on how to grab a relaxing moment. No. 15 was something like “Take a bath.” Well, duh. Oprah says she hugs her puppies. I hug my babies. God, I’m so O.

I peered up from the Captain Obvious article about relaxation (Ugh, could have written that in my sleep for Queen O at, what, a buck or two a word?! C’mon). A doctor walked over and pulled a tumor out of her pocket to show the family of the child who might have the nervous system cancer. I’m going to guess it was in some kind of specimen jar. Despite my hospital waiting room voyeurism, I couldn’t get a good look at it. She described it as rubbery and sticky, but said it probably hadn’t spread. They got all of it.

Tuggle came by to talk to me. Eli was out of surgery.

Tuggle — a surgeon who fixes teensy guts — is the only medical person here who I’ve told I was keeping a little blog about my experience. Earlier, he remembered, because I told him I wanted to snap his picture.

“Oh…is this for the blog? I haven’t read it yet,” he said.

“Don’t worry,” I said. “I say only good things about you.”

I like Dr. Tuggle. I repeat: I like Dr. Tuggle.

He has clinical expertise and warmth, two things that don’t always go hand in hand.

When we first saw him prior to Eli’s procedure he fawned over Laila’s hat, which kind of looks like a cross between a monkey and the abominable snow man.

She froze in place, shy and catatonic.

Now Tuggle was approaching me in the waiting room as I drank free coffee and read my “O” Magazine. Reading with a running internal monologue that mocked, with jealous asides, was my relaxation moment.

The procedure went well, he relayed.

Mark, Laila 1.30

Eli bled more than they expected.

Why?

I think Tuggle explained that Eli had healed faster than they expected. They had to cut through scar tissue.

The ends of his two intestines, which had been poking out of his body, are sensitive, too. If I knicked one with a finger as I changed a tummy bag, it would start to bleed a little. So my guess is, too, that those ends would bleed a lot if they were being aggressively handled.

“Do you know what Spirit Gum is?”

It took a second but it clicked.

“Yeah, it’s that sticky substance they use in theater, to put stuff like beards and mustaches on.”

Tuggle described the scar tissue – I think I’m recalling correctly here — as looking like the stringy stuff that appears as you touch Spirit Gum and pull your finger away.

I had 1990s community theater flashbacks for the rest of the day.

“Oh we got trouble my friends, right here in River City! With a capital T and that rhymes with P and that stands for Pool!”

When they wheeled Eli back into recovery the first thing I noticed was the pallor of poor buddy’s complexion as he laid in his new stainless steel crib.

“God,” I said to the nurse. “He looks gray.”

Eli in recovery. Pale and unhappy.

Eli in recovery. Pale and unhappy.

He tried to cry out but his voice was weak, raspy.

The breathing tube he’d had in for his surgery irritated his throat.

Ugh. My baby was in pain.

He would need two blood transfusions and then platelets to help with clotting. I think he lost something like 10 percent of his blood volume.

I took a look at his tummy. I’d gotten so used to the red ends of his intestines poking out it was strange to see his belly was smooth again under its dressing.

Poor little guy.

“Mommy’s here, buddy. Good job today. I love you buddy.”

Having anything done to Eli is scary, but the difference in how I handled this procedure versus the first one was profound. We’ve had time to process everything that’s happened – the discovery of a blocked bowel, his cystic fibrosis diagnosis, the fact he’d need another surgery to fix his guts. I felt calm as they wheeled him back this time. Last time? Emotional hamburger. My nerves for this second procedure were sturdy, not raw.

I don’t want to misrepresent myself here. I’m not a 24/7 bastion of strength – not even close. Example: the night before he went in, I thought I might watch a few informational videos about cystic fibrosis.

That went well – at first.

There is a new drug that’s been discovered called Kalydeco. Forbes called it the most important drug of 2012. It treats the underlying cause of cystic fibrosis for another mutation – not the same mutation Eli has.

It lays the groundwork, though, for the science, which means there are more exciting discoveries and medical advancements on the horizon, probably during Eli’s lifetime. It’s the kind of news that makes me hopeful for buddy’s future, for his life.

The same video featured a 14-year-old boy and a woman who looked to be in her 20s. They really were thriving as they managed cystic fibrosis. What got me down? The clencher? Their gravely voices. My guess is that it’s from weathering a constant cough.

And, of course, I started to cry for those raw little throats. And because Eli may someday have a raw little throat.

Emoting isn’t something I like anyone outside of my world’s teensy inner circle to see, which makes me feel totally overexposed when I admit to it.

Part of my hangup – I ply a trade that requires you put normal human feelings aside to get the job done.

I attended a school assembly for a 6-year-old child whose father murdered her and her mother. Angelic choir voices paid tribute to little Evelyn as a cool misty rain fell. Teachers read poems in shaky voices and relayed Evelyn’s love of flowers. Children released hundreds of green balloons into the air and turned their tear-streaked cheeks to the sky.

Nope. Didn’t cry.

I threatened my editor while I was pregnant that I’d cry at a shoot out if they pulled a dead child out of the home. Wait, why was I at a shoot out while I was pregnant? Bad parenting decision. Really stupid.

Anyway, a police officer rescued the child, a sweet little girl, as she walked out the front door. Authorities believed the father was holding her hostage at the home. Maybe he was, but he killed himself inside as a SWAT team surrounded the place.

Wendy , that man’s mother, threw herself on the ground and screamed when she learned the news. Wendy had a couple of gold teeth up front. She was well dressed in a floral beige ensemble. She looked like she was on her way to church.

“I hate this part,” I remarked to another reporter as she sent those primal screams up to the heavens.

She later sat on the curb next to me that sweltering summer day in a little patch of shade. Grief had moved through her body like a trifecta of natural disaster: earthquake, tsunami and tornado. She was tired. I was pregnant and my feet hurt. We made an odd pair. I offered her a water bottle and my condolences. Then I filed a story.

My dad can’t read my stories – he instead skims the headlines and thinks to himself, “What an odd career.”

It’s not that I don’t feel — I feel for these people very deeply, especially the mothers.

I make a living covering human tragedy. That means I just can’t let every terrible reality I write up penetrate the membrane that keeps my mind’s emotional forces from escaping at the wrong time. I’ve gotten older and used to it all and that membrane has toughened up. If it ever turns to stone, it’s probably time to quit.

It’s a totally different ball game when it’s your kid. I’m writing about Eli but I’m no reporter now. This is my boy. My child. It’s another story, and watching him suffer is stressful beyond words. Thinking about future hypothetical scenarios — even a future raw throat — scares and upsets me. It’s also pointless. I’ve been trying to keep my mind in the present and wring happiness out of every small moment we can grab.

Wait, did I read that last bit in O Magazine? Maybe I did. So? She’s so wise… I love you Oprah. I can be your fatter, whiter Lisa Ling.

Eli recovering on Jan. 31.

Eli recovering on Jan. 31.

Staying in the present is hard. I’m a future thinker and my head slips up sometimes.

Eli is a gift for a lot of reasons. Not the least of which is that my empathy well continues to deepen.

The night before his surgery, the night those rough little voices on a You Tube video made me weep, I started watching Gossip Girl on Netflix Instantplay. The cure for stress, for me? Skanky, mindless teen drama.

Mark went out to see his friend at a comedy club. He offered to stay but I sent him out so I could be alone with my slutty, ruthless upper Eastsiders.

The color today has returned to Eli’s face, and I’m so relieved. His heart rate spikes when he whimpers in pain. I just had the nurse give him a morphine boost.

Poor little guy.

I hope he heals fast and can be with us at home again soon.

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6 thoughts on “Round 2

  1. Angela says:

    I’m similar in that I think about future hypothetical situations and I set emotions aside to get the job done. Most of the current hypothetical situations I think about are about what might happen when we have kids. Mostly because of my current job. This particular post makes me feel like we’ll be able to get through anything, too. We think about Eli every day and are so happy that things are getting better. I check my email all the time for Eli updates. No pressure. 🙂 A lot of people here love that little guy!

    Like

    1. j&m says:

      The future hypotheticals will kill ya! (unless they involve glamour and riches!)

      Like

  2. Kelly Pyszel says:

    Julie, thank you again for having the courage to share so much about all of these scary encounters with Eli’s cystic fibrosis journey. It helps us who love you to understand a little bit of your experience, and to pray more specifically for his needs and yours as a family. You are a fantastic writer, by the way!

    Like

    1. j&m says:

      Oh girl ain’t no thang but a chicken wang. Sorry, just had a flashback of us dancing to Outkast. xoxoxoxxo

      Like

  3. Ruth says:

    I remember seeing you in that show!!! (and Amy of course). Sending well wishes for Eli. You are a strong lady.

    Like

  4. Jenn says:

    HI- I found your blog through reddit. Just wanted to let you know that my husband is 33 with CF. He lives a pretty normal life and I expect him to be around for a long time. There is a 6 year program in place through a partnership of Pfizer and The Cystic Fibrosis Foundation to find a fix for the most common mutation DeltaF508. I have no worries that your son is going to be fine. Also I work in ultrasound and once the babies recover from those abdominal surgeries you usually can’t even tell there was ever any problem.
    You seem pretty grounded so don’t kill yourself with the what-ifs. Live each day as they come.
    Best wishes to you and your family.

    Like

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