With very little sleep, words aren’t coming to me today. Will is sick, presumably with an ear infection that is leaving him lacking sleep and not wanting to eat.

It is a delicate tightrope we walk. With his mito dysfunction and without sleep, his GI system starts to have issues. When the GI system has issues, we see reflux. Reflux causes fluid in his ears and swallowing trouble as his esophageal dysmotility is worse. The fluid in his ears causes an ear infection (which is how we got in this situation in the first place), and the whole cycle repeats itself.

We do this dance every winter. Every winter, he gets a fresh new set of PE tubes. Last year I asked the doctor for the more permanent tubes. He declined, for reasons I can’t fully remember. So, again this winter, as soon as the cold season hit, the dance began again.

Today I’m on the phone with the doctor’s office, having cancelled his school, his respite worker, and other activities we had planned for the day. The bad news is that I’ll be waiting all day for them to call me back. Then, how soon I can get him in to see the (very busy) ENT and get surgery scheduled is another battle entirely. 

Each winter we lose months because of this ongoing battle. Today, I’m feeling defeated. Some days I wonder. I know we have a good team of doctors and that they want what’s best for Will. We’ve dropped those that had no bedside manner or didn’t seem to understand that his needs were more than the average kid, but overall, we are pretty lucky. Why is it then, that we have to fight year after year, losing months each time, over something so minor (in the grand scheme, at least)?

Off to get another cup of coffee and wait on the phone some more. Maybe I’ll have better news next week. 😉

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