This is Eli

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

I’m at a cafe and it feels pretty darn good right now.

We had a challenging few days, but I’ve gained new knowledge about Eli and the way his body works.

Regarding little buddy and his illness, I got a sense of what he sounds like coughing with CF. The cold grabbed hold in his lungs much faster than in my daughter, who does not have CF. The virus irritated bacteria that hangs out there, and he got an infection, it seems. His cough was wet and deep and it’s hung on for at least a week, but it seems to be on its way out now. I had a doctor listen to his lungs to make sure things weren’t getting serious.

When he’s better, I’m going to get myself a stethoscope. This was Pam’s suggestion. She has moved all over the country with her family, and one of her kids’ first CF doctors had suggested this to her. The point is to make a note of how many breaths Eli takes in 15 seconds when he is at his healthiest. So as he grows, I’ll get this baseline. Then, if something comes up, I’ll know what to compare it to. If he’s breathing fast or in a way that’s labored — these are signs he needs some medical attention.

I also learned, or rather, got a re-introduction, to being my kid’s advocate. No one but his parents can do this. No one is in a hurry like you are to get your kid the best possible care and get it fast. I don’t care if the crud in his lungs is a relatively minor concern, as far as lung infections go. I want it gone…now. BAMN.

Also, when a little buddy with CF gets sick, it’s not like any other kid being sick. The care you do for a child with CF demands a lot of families normally. Even with Eli’s cold being pretty minor, the list of things we needed to do for him just about tripled. Mark and I did not have time for anything else for days — although we did manage to go get Laila to her ballet lesson. I thought of some things Eli’s doctors and nutritionists didn’t. Like, he immediately got the runs when we put him on an antibiotic. Antibiotic can knock out good gut bacteria, causing a horrible infection called C. diff. I complained about the state of bud’s poo and made sure with a nutritionist and his doctor that it was OK to give him Culturelle and/or yogurt to help restore his gut bacteria. They gave me the green light on that. So once a day, he’ll get a packet of Culturelle (live cultures in powder form) in his bottle, or he can try yogurt. We also reduced his antibiotic from 10 mL per day in two 5 mL doses to 2 mL 3X per day, which is the low end of the dose range for his weight. Hopefully that will make his tummy more comfy.

The clinic suggested an extra session on his vest. He already does about an hour a day. We bumped that up to close to two hours – two 40 minutes and a half hour, split up into segments, or not if he’s in a good mood. I’m practically torturing poor buddy. His lack of mobility and strength is helpful, poor little boy. He can’t turn off his machine, or rip the tubes out, or run away. He is a cozy baby anyway, and extra when he’s sick, so he actually likes his vest when I stick him in his Ergobaby or Moby wrap with me. When he becomes a toddler, I have a feeling his vest sessions are really going to get interesting.

Oh no she's introspecting again...oooh, a foot.

Oh no she’s introspecting again…oooh, a foot.

Little buddy and his CF push me all kinds of wild and unexpected places. CF is a head game, but I think I’ve calmed my mind and gained some insight.

We took a family outing to the children’s hospital to get Eli a throat swab, to see what might be growing back there.

There happened to be a “summer camp” event going on at Children’s, in the atrium. A local band played.

Little people stuck at the hospital came out to do crafts and listen to music. Laila and my family weaseled our way into the event.

Laila danced and danced. She made a little friend. Her little friend danced too.

Every once and a while little friend’s mama had to tuck her IVs back into cuffs that kept them from swinging. Little friend could really move, so her mama had to do a lot of tucking. Little friend had a lot of wires stuck in her.

Another little friend was nearby. He didn’t move much, or make expressions much. He sat in a wheelchair and stared straight ahead. Black stitching held together a 7-inch scar across his forehead. It etched its way back into his shaved hairline. A bag of urine hung from his wheelchair. It was tinged with blood.

People go through things.

Me, my family, Eli — we’re not the only ones dealing with some sort of difficulty.

If this whole experience makes us more empathetic and sensitive to the suffering of others, it’s not a bad thing.

It’s just life.

Eli sat with me and cuddled with me in a swingy cafe chair listening to music.

My daughter danced and danced and danced with little friends.

Life is pretty crazy. Sometimes it’s just crazy. Sometimes it’s pretty. It’s always moving, moving moving on forward and turning and zigging and zagging, unpredictable, like Laila’s dance moves.

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5 thoughts on “My buddy and his lungs 3: Doing better

  1. I really hope your little guy is feeling better soon. It’s so difficult to see them not feeling well.
    I was wondering how you managed to get the best so soon. I have a one year old and his doctors said he couldn’t use the best until he was at least two. He really fusses when we do his percussions and I think it’s causing him to have the beginnings of a hernia. (Something common in boys with CF).

    I was so glad to find your blog. Keep fighting the good fight!

    Like

    1. j&m says:

      Hi Brooke! Thanks for the note. You know, I was told 2 by the CF clinic as well. So was another mom who just had her infant diagnosed. However, in Eli’s second stint in the hospital, I noticed they put him on a little wrap-around vest at just 2 months old. Then I asked -slash – demanded one. The clinic staff was very helpful and filled out the paperwork right then, so I’m not sure why I was initially told 2. Luckily, my insurance co. picked up the tab. I have to bet that there is some program somewhere that would help pay if not insured.

      Like

  2. Ruth Deljevic says:

    So true – we just have to look what others are going through to gain our own perspective (although we still have sucky times). That’s why Kelly Hatfield is my hero.

    Like

    1. j&m says:

      Kelly Hatfield is my hero, too!

      Like

  3. Amy says:

    I’m impressed that you can get him to sit there for a 40 minute vest treatment! E is over it at 20 minutes so that’s as long as we can go each time!

    Like

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