Then the reflux laryngitis appeared, making the little guy sound as if he smokes three packs per day.
I thought (and hoped) that the nasal C-Pap mask contributed to the last reflux flare-up in August. I was wrong.
It's back, and it is back in full force.
You can hear it in his voice. The hoarseness is caused by acid damage to his voice box.
He spent much of today crying and in bouts of pain. His entire gastrointestinal system is rebelling. He kept holding his hands in front of his mouth, and he told me repeatedly that his stomach wasn't working.
I hate this. I hate what it does to him.
Hopefully this will be a short flare-up. He is still eating well, so that is a big plus. Right now, it is just the pain, cough, gagging, and hoarseness that seem to be causing problems. With the laryngomalacia, he is wheezing and has loud stridor at the moment, too.
The pain isn't constant, which is good. He'll be going along just fine, and then an attack will hit him and immobilize him. We went letterboxing today (a pastime which involves a very short walk to find a hand-carved stamp - this one was hidden by a local train station), and he did fine for part of it. Then the coughing and gagging started, so we headed home.
I can only hope that this flare-up is brief, and that he'll be back to himself very soon.
We see the ENT again in November, and we need to ask her what the long-term damage to his vocal cords is going to be. He has worked really hard to listen and speak, and it frustrates me that the reflux is taking away his sweet little voice.
6 comments:
Oh my goodness !! Leah I this is such terrible news. Hope there is no damage,I know hard we mums and kids need to work on speech .prayers for you guys !
And it just infuriates me how hard you've had to work to get him the antireflux meds he needs. Maybe you need to capture one of his painful attacks on video and take it in person to the office of whoever at your insurance company gives you grief about this. How anyone could treat the suffering of a little child in such a cavalier manner is beyond me.
Enough ranting. (I rant when I know someone is suffering and I can't do anything about it. It's a coping mechanism.) I hope the reflux evaporates ASAP and Nolan gets back to the energetic, cheerful state he was in in your last post.
Poor guy!! :( I hate this for him (and you). I hope it is a short bout for him.
Have you been able to figure out any precipitating factors? Anything in common before these flares?
Wish these kiddos' GI tracts would just BEHAVE!!
So sorry to hear that! Just when it seemed that everything was going well too... Sending hugs!
Oh Leah, it just breaks my heart seeing the pain on his face and hearing that hoarseness.
Praying for you guys,
Julie
His energy level is good, at least. He does OK in between reflux attacks. We get very frustrated with the insurance fights, but at least he has access to his meds at the moment. If we have to proceed with a fundoplication, a cheaper medication may be enough to control the residual reflux. GI issues are so frustrating - they're painful and so random.
Kyla, the only thing we can figure is the C-Pap worsens some of the reflux issues. His reflux is off-the-charts severe, but usually completely "silent." I think it makes him feel sicker when it gets into his lungs (which is why we may have to consider the fundo - something we've been trying to avoid for a long time). Everything is such a guessing game.
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