This is Eli

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

Any cold Eli catches can flare up the gunky stuff his lungs hold. It is called a “CF exacerbation,” which is, basically, a bacteria party in Eli’s lungs.

That is what happened in September, and then October, and again, potentially, in November.

We’ve reached 60 days of hacking and counting after three rounds of antibiotics. The meds would appear to work, Eli would get better, and then, sicker. He’s been off antibiotics for about a week now and doesn’t seem to be getting better.

It all sends me into periodic moments of despair. I’m stuck in one now.

I feel like I’ve somehow failed him. Like – maybe we should have pulled him out of school for a week. Or I should have enrolled him in a sport by now to boost his lung strength. Or hooked him to his shaking machine for more hours of torture. Or started cooking anti-inflammatory meals sooner than a month ago.

And then I think…You have no vacation or sick time left and need to save your salary for larger medical events, for which unpaid FMLA won’t cut it.  Mark’s teaching schedule means Eli can be home later this week for a Thanksgiving break, and around Christmas, too, for a break from the preschool germs.  And as painful is it is to watch his colds stick, he needs to catch them to develop his immune system. Hey, you –  he is just 3, too little for most sports, and you run and play all the time in the fresh air with him, until he plops down on the sidewalk and claims he is “running out of power.” You took him to swim class. He refused to let you leave him with the instructor, screamed bloody murder and chased you to the bleachers before you gave up and took him home early because he didn’t want to be there. And are you not about to enroll him in both winter basketball and spring hockey now that he is a little older? And at least you care about nutrition, you!

My mom guilt ghost haunts me, never far away. All I can do is push the negative thinking aside and focus on what we can do next for Eli, instead of how we have failed him.

I’m taking him to see the doctor tomorrow, and in the mean time, collecting a poo sample from him. The method would otherwise be a prank -plastic wrap over the toilet bowl is apparently how you get that done. I shall next take that encased poo, place it in Tupperware and transport it with us. Oh, joy. His clinic is testing him for C.diff because he has the runs. C.diff can happen when antibiotics inadvertently clear away your good gut bacteria, and I am hoping and praying Eli does not have this, because that would be serious.

They are also going to swab him to see what viruses or bacteria are lurking about in his lungs.

We in the mean time added the unsexily-named postural drainage to his routine, in addition to his shaking vest, breathing treatments, enzymes, Culturelle and vitamins that he takes. That means Mark or I will pound on him for an extra half hour with cupped hands or rubber cups while putting him in different positions, all designed to get him to clear infected gunk out of there.

We gave it a go over the weekend, and Eli tolerated the therapy and goofed around with me while I tapped on him.

Then he broke my heart.

“Why are you doing this too me, Mommy?”

“You have a disease called cystic fibrosis.”

He paused thoughtfully, then turned and asked, “Is it bad?”

What could I say to my baby, my inquisitive, rowdy little bruiser with dimples and curls, as I tapped him with blue rubber cups on the carpet Saturday morning?

“It’s – it’s just a disease,” I said, shrugging. “It’s just a disease, buddy.”


One thought on “Eli’s cold doubles down, and so do we

  1. Karen says:

    When I was in the second grade I missed two months of school, part of which I spent in the hospital. I don’t know what I can say to lift your spirits, save this. I survived. I have faith that Eli will too. God knows what my mother went through, I can only imagine. Hang tough, and know you are walking a well-tread path. Tomorrow is another day, and a little farther down the path.


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