Since his birth, Nate has had chronic congestion. On top of that, recent hearing tests (specifically tympanometry) indicated that he has fluid in his middle ear. Very often people with Down syndrome have poor Eustachian tube function. This tube connects the middle ear to the pharynx and allows for ventilation. When the tube is shorter (which is often the case with in children with T21), there is increased potential for fluid to collect (instead of drain). The gunky fluid that collects in the middle ear can make children more prone to ear infections and can cause conductive hearing loss. According to the book, Early Communication Skills for Children with Down Syndrome, an estimated 65 - 80 percent of children with Down syndrome have conductive hearing loss. Even though the hearing loss varies, a build-up of middle ear fluid may make a child hear, "It's fine to go get fed" when you said, "It's time to go to bed."
At our recent ENT visit in January, the doc still couldn't see in Nate's ears. Based on his hearing test, chronic congestion, sleep apnea, and ear infections she recommended long term ear tubes and an adenoidectomy. Well, she said she'd at least try to get tubes in and take his adenoids out.
Well the good news is that Nate had his surgery on Tuesday and it was a success -the tubes are in and the adenoids out. Our amazing doc was pretty determined. She also mentioned that his tonsils were bigger than she thought. It could be another factor contributing to his sleep apnea. Hopefully we'll know more about that after his sleep study in May.
The not-so-good news is that Nate has had a pretty high fever since his surgery. He had some difficulty waking up from anesthesia and did need extra oxygen. After a few hours (with lots of singing and us reading his favorite books to him), we finally got him to stop crying and eat some pureed pears and drink a little milk. We thought he was perking up! Well we got home and felt super hot. He had a lot of difficulty breathing and developed a yucky croupy cough. I think some of that is expected after surgery. Though what is not expected, is that Nate has basically had a fever daily (spiking to 103 and higher) since Tuesday and has been quite lethargic. He's been up for only a few hours each day. Just not his spunky little self.
Today, Saturday, his pediatrician had us come in again. We decided to go ahead and get a CBC on him. This afternoon we got the good news that his white blood cell count is in the normal range, indicating that Nate probably has a virus. He has been more thirsty today and finally ate a little of his favorite snack - Pirate Booty! Of course he crashed again by 5, falling asleep in our arms, poor Beanaroni.
I am trying not to worry....I keep reminding myself that children get sick. They all do. We've just never seen Nate quite so tired - he can't keep his eyes open. He's like a little droopy flower. When he is wake, he has a continuous little whimper. Oh it is just awful. He clearly doesn't feel well and he can't tell us where it hurts. And the worst part -we can't fix it - which is what we really want to do. He looks at us with those big teary eyes and all we can do is hold him tight and say, "I know, I know, it's going to be okay, you'll be better soon...Mommy and Daddy love you..."
(Boy, I wish all it took was love!)
***Edited Tuesday --- Nate's fever is gone!! Wahoo! --***
So here are a few pictures from our week. They seem to capture it all........
5 months ago