This is Eli

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

Streeeeeep aureussss!

I’d like to thank my gene pool, Mark’s gene pool and modern medicine, without which, I would never know what was growing in Eli’s lungs.

But seriously folks, my son goes to a pediatric lung doc every three months to get a throat swab to see if there is bad bad shit in there.

This one – strep aureus. Not so bad. He’s had strep aureus before. He’ll probably have it again. Strep is everywhere. Germs are everywhere. You can do the best you can, washing hands, bleaching down the floors and door knobs — but you will never avoid germs.

Pops took Eli to his last clinic appointment, where we learned Eli needs extra vitamin E and to keep pounding food.

He didn’t chart as much weight gain as he did at his last appointment. Getting fat is a priority because cystic fibrosis little people who can stay in the 50th percentile and above have better health outcomes long-term. Eli hovers around the 90th percentile. I’m not too concerned about little fatty, but we’ll keep pushing butter.

Eli’s swab results thus far have not come up with the especially scary crap in his lungs. If his swab test came back positive for pseudomonas, for example, I’m pretty sure I’d cry.

Pseudomonas is one of several alarmingly-named bacteria groups especially harmful to people with cystic fibrosis, and Eli hasn’t shown it yet.

Pseudomonas is a ubiquitous mother fracker that lives a lot of common places, like the faucet. We at least try to keep Eli away from things that are damp, like piles of laundry, where pseudomonas likes to dwell. Eventually, he’ll get an infection. There isn’t much else you can do, other than wash hands, cross fingers or pray depending on what you do or don’t believe, keep a positive mindset, educate yourself and do what the doctor says will keep your child healthy.

When his doctor told us he had CF – I cried. No, I didn’t just cry. I grieved for weeks and months until Eli replaced the vision of life I had before he was born.

When his doctor told us care would take as long as two hours a day for the rest of his life, I wept, practically melted into the floor.

When a throat swab first came back with some alarmingly-named germ bug I didn’t understand, I cried. I raised my voice. I wanted an explanation.

When he got his first cold – his first real cold that revved up bacteria that sticks in his lungs because his wonk-job cells make his body’s mucus thick and sticky — oh, I cried. He coughed, really coughed, for the first time. I cried alone. To my dad. To my sister. To Mark.

You can’t cry all the time. I don’t cry all the time (I swear). OK, so I wrote a column about crying on a plane that includes me taking in his diagnosis…crying..
SO WHAT. We have a fatal illness in the family. The new things that come up tend to freak me out. I scramble to place blame (without fail, on myself). I mean, did I or did I not blame his CF-related blocked bowel on pumpkin spice lattes I had while pregnant?

(mmmm pumpkin spice lattes)

It’s not good to live like that.

It makes more sense to be as happy as you can as often as you can than to focus on placing blame and dwelling on total utter BS. It makes a lot of sense to not only seek happiness and appreciate it but to protect that happiness because it is sacred. It is sacred and essential and central to a good life.

As Eli has gotten older, the stuff that used to make me cry has become just part of this game we call life. And we roll with it.

So staff aureus? I’m not that concerned. I didn’t even flinch when his clinic coordinator told me this one came up in his throat swab.

We do his care routine. A half hour twice a day on a shaking vest. More if he’s coughing. Now that he’s 2, he does Pulmozyme everyday through a nebulizer. That means we take a plastic squeezeable capsule of Pulmozyme out of the fridge and squeeze it into a plastic cup. A compressor pushes air into the cup, which is designed to turn medicine into mist. He breathes the mist through a mask. We do a treatment of Albuterol this way first when he’s coughing, which he is right now. Then, twice a day, we boil his nebulizer parts for five minutes and wash the mask with soap and water.

Eli has been flipping the $%#$ out about his treatments for the last few weeks.

Out of nowhere, he quit freaking out.

And that made me VERY HAPPY.

He sat there like a big boy, watching cartoons with his mask on. Then he watched more cartoons while wearing his vest.

He did such a good job. I breathed a huge sigh of relief.

Eli makes peace with breathing treatments.

Eli makes peace with breathing treatments.

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