This is Eli

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

Hey everyone. It’s been a rough week, and between working and taking care of buddy, I tend to sit down to ‘relax’- ha- at 11 pm, at which point I pass out.

Eli got sick over the weekend with a sharp cough and on Monday, he ran a high fever and struggled to breathe, with his tum, chest and neck muscles straining to squeeze his lungs, which weren’t working like they should be.

I ran him to the ER and got the news pretty fast that we’d be staying a while. That news stung a lot since he’s never been hospitalized with lung issues. I got word fast he’d be put on these meds right away, too:

All three


At once?

‘No, one after the other, but continuously until we figure out what is going on with his lungs.’

Every time I get news about some new med Eli’s going to get I have this thought: “is Eli going to have an allergic reaction and die?”

I have anxiety about this. I just do. The doctors could tell I looked flipped out and at one point I think I remember about two doctors and a nurse explaining these moves and then I go, “don’t worry, I’m not one of those anti-science assholes. I just like to understand.”

What a thing to say….

Here’s Eli when we got to the ER. Pretty out of it.

Next came a series of tests and boy was he pissed off. I don’t blame him. At 3 he has an opinion. He feels- rage, fear, anger and sadness all poured out of him. I begged him to pee in a cup. He refused and I had to hold him down for about three tests and an IV placement.

It sucked . I tried so hard not to cry I was barely able to breathe and tears streamed down my face anyway.

Poor little guy. It felt awful to do the opposite of what he wanted, which was for everyone to piss off instead of stick him full of needles and tubes.

A child life worker did her best to distract buddy and keep him happy, which was nice. He was inconsolable for the most part despite our best efforts of bubbles, toys, an iPad and reassurances that it would be over soon.

We got a room Monday night and haven’t left his side since. Mark’s been on days and me nights.

In short, Eli had a severe type of cold called RSV and two other viruses that caused his CF lung funk to flare up and mess with him, causing his distress.

He wears a ‘pulse ox’ thingy on his toe to measure his blood oxygenation and pulse. We had a pulse ox photo session yesterday. He wanted to show it off:
Also, kid you not he was watching a YouTube crane video – must be a boy thing- and we opened up his window to spy his very own crane, which he insists on monitoring daily.

Eli feels much better and had a PICC placed yesterday, which is a more permanent and less painful option than his original IV. He screamed in pain when they pushed meds in through the old drug pusher.

This hospitalization, Eli is breaking our hearts.

He launched into another inconsolable tantrum and filled the entire floor with his screams ahead of his PICC line procedure.

“I really really want to go home!”

Luckily, he got some good sedation and it seemed to reset his mood for the day yesterday.

But every time one of us leaves, and especially when Laila goes home, he cries and tells us he “really really really” wants to go home.

And don’t get me started on Laila. She has been so sweet to brother, making him pictures and cards and insisting we rush to the hospital to see Eli the second so pick her up from school.

Mark broke the news Eli would be coming home with a PICC line.

“No,” she objected. “I don’t want him to have a PICC line. He’s cute just the way he is. I don’t want him to have a tube I his body to his heart!”

Then she cried.


Here is Eli eating Mickey Mouse pancakes that arrived inexplicably garnished with parsley.

….And looking at his crane over breakfast in case it moved. (It hasn’t moved yet).  

We got word Friday-today, it’s past midnight!’ is the day we can take him home.

I am now kicking myself. I told Eli. I told Laila. Today his docs took him off the O2 and he did well, but later, after Eli went to sleep tonight, his blood oxygenation dropped again, meaning he needed more oxygen and might have to stay another night, at least.

We will know more in a bit.

I want him to heal and to heal at home as much as possible.

Thanks to all for kind words and gestures in the face of a tough week. It has meant s lot.

Every first with Eli’s disease is emotionally jarring, for us and our little dude.

And sorry for the typos- I’m plucking this out on my phone and am too exhausted to go back and edit!


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