Yesterday marked tube set #4 for little Ellery. We thought the permanent tubes (or T tubes) would finally allow her ears to drain properly when we put them in 2 years ago. Unfortunately, we've run into infection after infection with the left tube nearly constantly clogged. The last 4 months her hearing has been significantly impacted, with almost no hearing in her left ear.
We opted to remove the tubes and put new ones in. Her doctor joked we should get some sort of punch card...buy 8 tubes get 2 free. I agree.
This is what her doctor brought out to show us. Ellery's case is quite unique. Apparently these tubes "never" clog. Until Ellery came around. Her ENT is convinced as I am, that Ellery and Emmett have a genetic condition called Primary Ciliary Dyskenesia. Basically their cilia don't work properly to move the fluid through their bodies. Hence the constant wet cough, rattle in the chest and runny nose and fluid in the ears. The condition is nearly impossible to test for, and there is no cure.
This dense clot of blood, crystallized inner ear fluid etc, was further inspiration for her ENT to write a special book. How to Treat Ellery. Thankfully, we live in a time where she can have tubes that allow for some drainage. Otherwise her hearing would have been destroyed years ago, and her ENT thinks she probably wouldn't be alive, from infection spreading from her ears.
I will count my blessings instead of my childrens coughs during the day or ear infections a year.
t h e m a y f i l e s is foremost a family blog, chronicling everyday life. Life including natural, healthy eating (with recipes thrown in at random), home educating (with ideas popping up sporadically), an attempt to homestead on .2 acres (with very meager yields), raising 3 of 4 children with a rare genetic disorder, and lots of highly personal family triumphs and failures. You may also find an eclectic array of musings on politics, exercise, sewing, emergency preparedness, backyard chickens, and religion. This blog isn't a campaign to glorify anyone or anything. Just simply a record.
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Poor baby! I hope these new tubes work better for her!
Bummer! Sorry to hear that! Hope the new ones work better!
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