After therapy this afternoon, Jessica is going to take Namine to the pediatrician. It’s been two weeks, and she still has a cough and congestion. Namine seemed to be doing okay last night, but this morning when she woke up, she couldn’t breathe through her nose. Sneezes are messy, too. Ucky.

To add to matters, Namine seems more lethargic today. Last night she was scooting around and playing quite a bit; I could hardly keep her still to read Goodnight Moon. But today, she is visibly ill. According to her doctor, the antibiotic should have kicked the infection by now, but it hasn’t. So we’ll try to get another chest x-ray at the doctor’s office, and see what comes back. If it’s worse than last time – or even the same, which would mean there has been no improvement in a week – we’ll most likely bring her in to the ER. We’re not sure what they would be able to do for her, save for admitting her to try and figure out what’s wrong.

While I’m on the topic of the hospital, I called the special needs line this morning in order to let them know that Namine has not gotten better, that we were bringing her to see her doctor; also to ask if they had any thoughts or suggestions. Surprisingly, they didn’t call me back, which they usually do. They called Jessica. I am glad for that, because she’s been with Namine all morning.

What I’m not glad for is the persistent opinion that they can’t do anything for Namine. Bring her in to see her doctor, but don’t bring her to the hospital, because there’s nothing we can do. You may think you can’t do anything for her, but you don’t even know what’s wrong. We need to find that out first!

If there is a negative to Namine not having a trach anymore, this is it, right here. When she had a trach, everyone took everything seriously – her health was seen as extremely fragile, and great care was taken for even the slightest infection. But now, doctors and nurses assume that she’s basically a normal kid. But she was only decannulated last September. It hasn’t even been a year yet, and the first year (that’s twelve months, kids, count ’em) is the most dangerous for post-trach kids. Even ignoring that, Namine’s immune system is still fragile. She’s only two years old, and she’s prone to sickness, especially in winter (which, in Wisconsin, lasts forEVER). I just wish they would take her being sick more seriously.


  1. I understand that. We’ve heard and deal with those same attitudes….he doesn’t LOOK “sick enough” or “acts fine”….when kids like ours compensate til practically at death’s door. Amazingly awful experiences have taught them extreme compensating techniques and raised their pain tolerances to mindboggling heights! Pitiful. Sad.

    Listen to your gut. Insist if you have to.

  2. I hope she feels better soon. This virus lasts forever. So many people I’ve spoken to still have a cough more than a month since they first got sick.

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