Only afraid in the dark

2016 is going to be the year that makes me tough.

Or maybe tough isn’t the right word. Let’s try ‘resilient.’ It sounds a little more like there’s a light at the end of the tunnel. Which theoretically there is. Remains to be seen though.

I keep trying to write about this thing we’re in, whatever it is. Phase. All of motherhood is one phase after another. And in their own way, they’re all hard. This one is, by far, the hardest. At least as far as I can remember. Sleep deprivation makes all things fuzzy and, to some extent, rose colored.

Anyway, back to the topic at hand… Oliver is sick, again. I’ve long since lost track of how many times. It started in September, I think, right at the beginning of flu season. Oliver scared the crap out of me by waking me up with a fever of nearly 105 degrees. Every time I tried to give him medicine, he threw it up, so we headed off to the ER at 3-something in the morning. They sat with us while we rode out the fever, and finally got some medicine in him, and then we were sent home, exhausted.

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A couple of weeks later, it happened again. We had just been to his doctor so we knew he had an ear infection, so we were ‘prepared’ with antibiotics and fever reducer. But again he woke up at 2am burning up. He was still a couple of hours away from being able to get another dose of his Tylenol (I didn’t know I could double up acetaminophen and ibuprofen yet.) So when he was already running a temperature over 104, we went back to the ER. They tried to give him medicine, which he promptly threw up like usual. They did a chest x-ray, a urinalysis, monitored his blood oxygen, all looking for what could be causing his crazy fever, because, according to the doctors who examined him, his ears didn’t even look that bad.

Finally the fever broke again, and they were just about to send us home, but they wanted to check his pulse/ox one more time, and it was low. So we were transferred to a pediatric hospital and admitted. It was an exhausting whirlwind of dehydration, several hours of trying to just get a damn IV started, a mega-dose of antibiotics, no clear diagnosis, and eventually going home. The only good thing I can say about this episode is that the hospital staff was amazing, and now we were finally armed with the tools to combat his high fevers from home.

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He continued to get sick though, every week or two. After the third (?) time since his hospital stay, I sat down with his doctor and said we need some answers. We agreed to look into allergy and immunology testing, and he gave us the name of a fantastic specialist. We were seen within a week, and again, I was super impressed with the level of care we received. The doctor heard everything I had to say, and actually told me I had done well and my instincts and experience were spot on. So now we knew what we were up against, finally. Officially: Transient Hypogammaglobulinemia of Infancy. Basically the immune system he was supposed to start developing between 6-12 months old is lagging behind. They think he will catch up and be ‘normal’ at some point (usually by 3 years old), but he will have to undergo regular testing to see what progress he’s making. And, his situation is further complicated by food and environmental allergies. And… AND… There’s no treatment, unless he were to not outgrow the condition.

Here is where we wait for that light at the end of the tunnel. But we’re not there yet.

Basically we do everything we can to protect him (including cancelling the trip back to Indiana for Oliver and me [even though that was kind of a bust because Brandon and Nora came back with colds, and he got sick anyway]), we almost never go out except for our weekly grocery runs, and even then I sanitize every surface within a foot of him and make him wear mittens the whole time.  And still he gets sick.

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Not one night goes by that I don’t reach out in the dark to feel his forehead.

I know in my head what the doctors say: that some day this will all be a distant memory. But my heart is tired. A sick baby burning up with fever is pitiful. He still scares me sometimes in the night, a couple of hours before he’s supposed to need medicine, too warm.  The rest of the time, I can be brave and roll with whatever his little body throws at us. In the dark though, you never know.