On Monday Connor went back to his ENT for his sleep study results and to check on his ear tubes. Once again we got no answers and left with more questions! We did learn that Connor does not need to have his tonsils out at this time because he does not have Obstructive Sleep Apnea which is good news. It was thought that he would definitely have Obstructive Sleep Apnea because of his extremely large tonsils. If this sleep apnea was found they were going to remove his tonsils and hope that would help his silent aspiration when drinking thin liquids as well. We did learn, however, that Connor has Central Sleep Apnea. This means that his brain is not telling his body to breathe at times during sleep. The report shows that he stopped breathing 18 times during the night for an average of 10 seconds and his oxygen levels dropped to 87%. The only thing the doctor said about this was that he probably should be on oxygen while sleeping to prevent dropping to dangerous levels, but we should see either a Pulmonologist or a doctor from the Sleep Lab.
So, the next step to resolve the silent aspiration problem is to have Connor go in for a Laryngoscopy which is exploratory surgery to look at the back of his throat and larynx and to biopsy the lungs. They did a basic version of this last time we were in the office, but they want to do it under anesthesia so they can go further in and see things more closely. If they do not find any structural damage causing the silent aspiration during this test then we will be referred for feeding and swallowing therapy to hopefully teach Connor the proper way to drink and the hope is he would eventually outgrow it. If they find food or something else in the lungs then we will be referred to other doctors. So, back to the waiting game.
I have done a lot of research on the Central Sleep Apnea the last few days since the ENT did not give us much info on it. It appears to be very rare in children. The Sleep Study was done at Tufts Medical Center since that is wear his ENT is located, but I decided that I would rather take him to Children's Hospital and was able to get him an appointment in the Center for Sleep Disorders on Monday. Hopefully they will be able to explain the report and give us some explanation as to why he stops breathing periodically during the night. I am still not convinced it was an accurate test since he didn't sleep a lot of the night and pulled just about every wire off at one point or another, so I do plan to ask about that as well.
It is very frustrating that we still have no answers and have learned of a completely new problem. If they do decide to put him on oxygen at night we are in big trouble because there is NO WAY he will leave it on!!!
Will update again next week as soon as we learn some new info.
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