Nolan had his follow-up with the ENT today. This appointment was supposed to be a post-op for his revision supraglottoplasty, but turned into a pre-op since his supraglottoplasty was thwarted by a "massive airway infection."
I put "massive airway infection" in quotes for reasons that will become apparent in a minute.
In any case, it was a 2 hour drive to the office, an hour and a half wait time, and finally we were called back to see the doctor. Nolan was weighed and measured, and we waited.
The ENT came in and reviewed his records, and Nolan looked at Where's Waldo? I asked if his culture results had come in, and his ENT looked at his records. The culture results weren't there.
The nurse was sent in search of them, and she returned with the report.
The cultures were negative. Nolan never had a massive airway infection.
We are not sure what the large amounts of pus in his airways was from. It wasn't bacterial in nature.
The reason he never had any symptoms of infection (no fever, no cough, no congestion) was because he never had an infection to begin with.
So our poor little boy was put out for surgery, scoped, and then told he would have to go through this all over again when there wasn't any infection in his airway at all.
I asked the ENT what all the thick white pus was, if it wasn't an airway infection. She shrugged her shoulders and said, "Maybe it was just thick mucus. At least we know now."
Lovely.
In any case, he is remaining on antibiotics long-term, since we don't know what all the junk in his airway and lungs was. He's also staying off C-Pap for the foreseeable future. This means we will have a zombie-boy for the next few weeks, as his energy levels dip considerably when off C-Pap.
The repeated surgery attempt will be on April 9.
So, Been-There-Done-That parents... what in the world would show copious amounts of "pus" on a bronchoscopy that isn't caused by a bacterial infection?
3 comments:
Oh Leah, that is SO AGGRAVATING! I have no idea. None. But will be praying all goes well on April 9!
Julie
Hi,
I've been reading your blog for a few months now. I can't seem to stop thinking about what you've written about your son because it sounds so similar to my sister when she was little. She had multiple issues - recurring severe ear infections to the point that her middle ear bones began to disintegrate and she has permanent hearing loss as a result. She also had terrible sinus infections that would cause her eyes to swell shut and bladder infections that landed her in the hospital often. She had multiple surgeries throughout her childhood for seemingly unrelated issues. They had diagnosed her with Crohn's disease but that turned out to be a mis-diagonsis. She was finally correctly diagnosed with Celiac disease in her 30's and after going on a gluten free diet, finally all of her symptoms have disappeared and she is healthy for the first time in her life. Since it runs in our family, we've had our 6 year old son tested for Celiac as well. It came back negative 3 or 4 times - our GI even did a biopsy which came back negative. But he is terribly underweight despite eating a lot so she kept testing him. And last year the test came back positive. We put him on a gluten free diet and he's finally gaining weight and looking healthy. I have no idea why the tests came back negative originally, but our GI tells us that apparently that's not uncommon. I can't help but wonder if your son might have celiac as well? It could explain many of his symtoms. Just a thought.
Nolan was born with a congenital hearing loss, and he has other issues that wouldn't be caused by celiac (heart murmur, posterior urethral valves, etc) - he has been tested multiple times and all tests have been negative (blood and biopsy). He is essentially gluten free since pediasure doesn't have any gluten and he only eats fruit orally. My other son has constipation and just had a blood test for celiac, though, so we'll see what that shows.
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