Oscar-Go

Oscar is on his fifth cold and/or nasty virus this season. Unless you count the relapse/secondary infection he had from one of those illnesses as its own sickness, then we’re at six. Every single illness has lasted a full week, except the relapse that lasted about four days, but that was the scariest of the illnesses, so it felt like more than a week.

A couple things happen immediately as soon as Oscar gets sick. For one, the respiratory regimen begins. This means nebulizer, cupping (also known as chest PT, which involves whacking him all over his rib cage with an inflated respiratory mask to loosen anything in his lungs), and cough assist every two hours during waking hours—and as needed overnight. In theory we can complete the “dance” as we call it in 40-45 minutes. And occasionally that happens. But usually when Oscar is sick the first couple days involve him needing to blow his nose every two minutes, so that slows things down significantly. If he has a fever then he is ornery to the point that everything becomes negotiation—I was an expert at stalling when I was a kid, and he has developed that same trait. Sometimes he is nauseous which makes him protest both cupping and cough assist because they both jostle his insides. Also, about 75% of the time, Oscar decides he hates cupping, that it’s like torture, and he screams how much it hurts, how we’re making him stop breathing, when we get a certain spot. (It’s all very dramatic: if Oscar doesn’t end up working at the UN utilizing his negotiating skills, he’ll surely be on stage or film exercising his dramatic talents…) So, often the dance can take a full hour, sometimes even an hour and fifteen minutes—at which point we have 45 minutes left until starting the next round.

The other thing that happens is David and I start panicking. We have visions of the hospital. My breathing becomes shallow. My shoulders tense and rise toward my ears. My chest tightens. My guts start roiling. And usually I hold onto this until I am certain we are out of the woods. This year, with these several illnesses, this has usually meant 4-5 days, at least. During these tense days I will find moments to be mindful of my breath—to slow it down a little, and find moments to ask my shoulders to ease just a tiny bit. But eventually the exhaustion takes over completely and I become a tense zombie (if that were actually true, Oscar might be thrilled—he’s taken quite a liking to zombies in recent months).

So far this illness is presenting like “just a head cold.” But with SMA there is no such thing as “just a head cold.” Oscar’s immune system is on par with any 6-year old. The difference is that once he has a virus, the chance of it turning into something dangerous is much higher than that of another child not affected by SMA. He doesn’t have the strength to expel the mucous from his lungs, like the rest of us do—hence the intense respiratory regimen.

What is one of the best things for a person to do when sick? Rest and/or sleep. Except the respiratory regimen makes that almost impossible. Those 45-75 minutes in between get taken up so quickly with preparing food and coaxing Oscar to eat it, bribing him to drink fluids, taking him to the bathroom, repositioning him on the couch or in his bed, that there is almost no down time at all for any of us. I know David and I have both, at least once this winter while Oscar was sick, suddenly found that it was noon and we had not yet that day even thought about eating something ourselves. Never mind if we have to throw a visit to the doctor or a chest X-ray into the mix. Every one of his illnesses (except the current one, fingers crossed) this winter has warranted at least one visit to the doctor, if not two, and he has had two chest X-rays. Those days completely throw off the whole every-two-hours regimen and completely mess with any semblance of routine we have tried to develop during sickness.

For all intents and purposes, Oscar has really not been sick in three years—since he had RSV and pneumonia that landed him in the hospital for nine days. He had a mild case of strep throat last year—no big deal. He has had a couple of minor colds each year—which after his colds this winter I’m beginning to wonder if they were bouts of bad allergies instead, because compared to the “just colds” he’s had this year, the “minor colds” from years’ past looked like birthday parties.

This winter, we’ve learned a lot about how Oscar’s body behaves when he is sick. When he has a fever, he gets nauseous. We know that now, and know that’s just the fever talking, and when the fever comes down, his nausea will subside. The first time it happened, we panicked that he had some sort of GI thing going on in addition to the respiratory illness. It was terrifying. Now we know to make every effort to treat the fever, despite Oscar’s wild protests. We have learned that a luke-warm bath does wonders to bring his fever down quickly—much more effectively than meds, if it is a fever of 102 or more. During one illness his fever made him look so terrible we were certain we were headed to the hospital. After ten minutes in the bath, he was singing and playing.

During one of the earlier illnesses this year we started a notebook to keep track of all Oscar’s meds and stats—because we just couldn’t keep all the numbers in our head otherwise. Albuterol nebulizer (can only be given every 4 hours, unless he is really laboring to breathe and his doctor says we can up it to every two hours), Saline nebulizer (used in between albuterol treatments), Pulmicort nebulizer (when he is sick we switch his usual twice-a-day Flovent inhaler to a twice-a-day Pulmicort nebulizer treatment—making the early morning and the evening dance that much longer), Tylenol (can be given every four hours), Ibuprofen (can be given every six hours—and if the fever is really bad we can give both together, we just still need to respect the 4 hour and 6 hour intervals of each medicine). In addition we now have an O2 monitor so we check his oxygen every few hours (more often if he seems like he’s struggling) and write those numbers—along with his temperature—down, too.

Sunday night, the first night of this illness, when I was putting Oscar to bed—and David was out at the grocery store—Oscar asked me some “what if” question regarding his illness (What if I get a fever? What if I get a bad cough? What if I wake up in the middle of the night feeling terrible? What if you get sick?—any one of the many what ifs we all wonder when he is sick). And I said, “It is what it is. We will all do the best to take care of you and ourselves. That’s really all we can do.”

I don’t know if it was saying those words out loud, or the fact that so far Oscar just isn’t as sick as previous illnesses this winter (he has not yet woken up in the middle of the night asking for cough machine or neb, and has not yet a had enough of a fever to really affect him), or the fact that I started writing this blog post at 5 a.m. Monday morning when he did wake up asking for neb and so the writing is having a therapeutic effect, or that I’m just used to this by now, but I am not panicking—for the most part—this time around.

We are on illness number five. One of those was quite possibly the scary respiratory virus Enterovirus that was going around this fall. Another came with a high fever and some truly concerning respiratory symptoms. And the secondary infection he had was terrifying from a respiratory standpoint. And yet he fought each one off at home. Going to the hospital is commonplace for SMA families—so truly we are lucky this winter.

I wish I knew what was allowing me to not panic this time, and how to bottle it for the next illness, because the panic can be paralyzing, all-consuming. I know the anxiety doesn’t help anyone in the situation. But it is so hard in those moments to not travel ahead in my mind, to where we could be headed, instead of staying present in where we are—at home.

So, for now, I guess I will take these past few days for what they are—after a hard winter of illness—a gift.