Monday we went to the Pulmonologist in Miami. Michael's lungs sounded clear, but they are concerned about his reflux. It's not under control yet and it might damage his lungs on the long run. They also think that his Pneumonia in March was caused by his reflux, and not our trip to Holland. So we decided to put him back on the adult dosage of Prevacid: 30mg a day.
His reflux might also have been the reason that he kept waking up at night and he had been cranky for about a week. He had started coughing a little, had a runny nose. But he seemed playful and fine. However on Tuesday he woke up in the middle of the night and wouldn't stop crying. The only thing that calmed him down was walking around with him and rocking. The moment you sat down, he started screaming again. This is so untypical for Michael. He also felt a little warm, but not feverish.
Tuesday morning I had to wake him up early to go to our hearing test in Miami. During the test he became scorching hot and I got really worried. He was totally out of it. Didn't even smile anymore. He also had been vomiting constantly. So I took him to the Pediatrician in Miami, since we were close by. He had a fever of 101.8. I had tried to give him some Tylenol but he vomited that too. Dr. Perello thought that he might have a virus and to make him as comfortable as possible and give him suppositories. He also told me to keep a close eye on him, because Michael can get worse in a matter of minutes. He has proven that in the past.
That night he got even more miserable. He wouldn't stop vomiting. He started shaking and he just had the saddest look on his face. I am so glad Robert was there to help me out!! Michael had a very rough night, but he seemed a little better in the morning. I am just keeping him home for a few days, so that he can recover.
Anyway, about his hearing test. They tested his right ear this time and they think he might have auditory neuropathy. They only found it in his right ear, not his left and this is somewhat unusual so they need to test him again. With auditory neuropathy, also known as auditory dysynchrony, the hair cells aren’t damaged directly but the neural impulse is disrupted or not in synchrony. This means that right now the degree of his hearing loss fluctuates from minute to minute, or hour to hour. It can be severe now , but in five minutes from now, it may be diagnosed as mild. So they cannot give a db number for his hearing loss, because they just don't know. They also don't know how much his left ear compensates for his right ear. It's not known what would be better for Michael. Some experts say that aud. neuropathy can be helped with hearing aids, and other professionals say that the cochlear implant is the way to go. Right now, I am still convinced that Michael can hear much more that we realize and we just have to continue testing him...
Here is a link to information on auditory neuropathy:
http://www.babyhearing.org/HearingAmplification/Causes/Neuropathy.asp
And this is a link to a simulation to hearing loss with auditory neuropathy, so that you can hear what patients are hearing:
http://www.ucihs.uci.edu/hesp/Simulations/simulationsmain.htm
So, Tuesday wasn't a very good day for us...
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2 comments:
Saying prayers for wisdom for the doctors, and for Mikey that he can hear like we can:-)
My son has hearing loss too. I have left some messages on your blog before. He also has auditory neuropathy. BUT it was explained to me a little different to how you have explained it. Thomas wears hearing aids. I keep asking about the auditory neuropathy BUT it is dismissed from both his audiologists and eraly intervention therapist (we do AVL). The good thing is that Thomas's loss has gone from severe-profound to now mild. Makes you wonder. And I have always said he can hear way more than we know!
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