Wednesday, January 4, 2012

Always something

Will has had regular sinus issues - infections, drainage, congestion - for several years. He had his adenoids removed in March of 2010, after which time we saw some improvement. But over the past year, Will has had a resurgence of sinus issues. It hardly seems fair given all the other troubles he deals with!

He's been on several antibiotics, seen his regular pediatrician and the ENT a couple of times. Unfortunately for Will, when he's sick he also has an increase of seizure activity. And if that weren't enough, when he's sick and congested, he doesn't sleep well. It all gets very old for him... and for us. We like sleep too! We just don't seem to get a lot of it.

This last time Will saw the ENT, he recommended that Will have a sinus CT. His issues were just too regular, and the doctor wanted to see if there were any structural sinus blockages causing all of these issues. This didn't seem too out of the realm of possibility, because both Nate and Oma have had to have sinus surgeries in their lives for structural problems.

We got the results of the CT today. I was not prepared for the result!

The ENT said that Will's left sinus under his eye showed some abnormalities. He tried to explain the exact abnormality to me, but I didn't catch all the big words. The long and the short of it is that the specific type of abnormality that Will's sinus showed is (9 times out of 10) caused by a fungal infection.

Huh? What about the structural issues we were expecting? Nope, none of those.

The ENT then proceeded to explain all about fungal infections - the only way to get rid of them is surgery. There are no broad spectrum anti-fungal medications that will work. Under general anesthesia, the ENT goes up through the nose, opens up the sinus and clears everything out. They also take a culture while they have the sinus opened, so that they can understand the exact type of fungus they are dealing with in the case that they need to treat it with specific anti-fungal medications post-op.

I had so many questions. The first being: WHEN IS THIS KID GOING TO CATCH A BREAK?

Of course no Earthly person actually knows the answer to that question. But to my medical questions, I learned that fungal infections of the sinus are not uncommon (they are actually on the rise) and can be caused by any number of things. The fact that this is fungal also explains why antibiotics never really effectively treated Will's sinus issues in the past (it always seemed that the second he got off of the antibiotic, he was congested immediately).

There is a 1 in 10 chance that Will does not have a fungal infection. But whatever is causing these abnormalities on his CT is thick and gross enough to need to come out of there - fungus or not. And of course, they can't take a culture to figure out exactly what it is without surgery.

So... more surgery. By my quick count, this will be the seventh surgery of Will's life.

It's always something.

This is an easier decision than the epilepsy surgery. We can see something wrong diagnostically, and there's only one way to treat it. No brainer. How soon can we get on the surgery schedule? The closer we get to sinus relief for Will, the sooner he sleeps through the night and the fewer drugs he takes. And with Will finally being truly healthy for the first time in a long time, he should have fewer seizures.

I suppose to most people this would be a tough thing to stomach and as a parent, would be pretty scary for your child. After all, it is surgery. But to us, this is a real solution to a persistent problem... one that has its insidious fingers entwined in too many arenas of Will's health.

Where do we sign?

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