Ellery has been in excruciating ear pain almost 24 hours a day for nearly 9 days straight. She can sleep only 5 or 6 hours in a 24 hour period. She spends most hours crying and pleading for someone, usually me, to take this horrible pain away. Often it only subsists for an hour or two on any given day, with some days a little worse and some a little better.
We did CT scan of her ears/head yesterday and learned that her mastoid bone has become almost solid in response to years of severe middle ear infections. A normal mastoid bone is full of air sacs which help relieve pressure in your ears and sinuses. Because Ellery's bone is solid now, it could be the cause of her extreme pain, anytime she has fluid in her tubes (which is always).
She learned some techniques yesterday to help relieve some of the pressure from her eustachian tubes, and they seemed to have helped a little as she had a great afternoon and a relatively good night. By far the best in a week and a half. We are hoping to avoid mastoid surgery for her.
I am hopeful she can become functional again, and that yesterday was not just a small reprieve but we actually turned a corner. She sees her lung doctor tomorrow, to assure she is not suffering from any lung exacerbations, and we are having some family counseling on Friday to help us all with the anxiety and pain.
We may opt to have her tubes removed. Maybe they are disrupting a pressure gradient. As they do not drain, they don't provide her any relief. (Emmett and Berkeley's tubes drain daily. I spend 20 minutes 1-3x a day pulling mucus from their ears. Annoying, but it keeps them from being in pain, and allows them to hear.)
Brent was out of town last week from Wednesday through late Saturday night. It was arguably the hardest 4 days of my life. Living with a child in constant severe pain is heart wrenching and exhausting. I can't describe it but maybe you know. Maybe you've had that feeling where your heart physically hurts, aches from sadness. Her siblings feel the effects as well. Each in different ways.
And yet during this time I have my angel friends watching over me. A sister in law who came to my door early Saturday morning when Ellery hadn't fallen asleep until 3:45 am, with bagels. She left. And then showed up 10 minutes later and took Callista and Emmett for the day. Amanda who let my children play for 5 hours at her house and offered more. She even kept Ellery distracted and in minimal pain. Marie, over in an instant to watch the children while I made a pharmacy run. Jill who showed up at my house at 6 am so I could go for a run, I ended up not being able to leave Ellery, but she was there. I am certain I am forgetting someone but I am still in a bit of a delirium.
I'm so sorry you guys have been dealing with this. Has her pain been alleviated at all since you made this post?
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