Life without medical equipment is NOT the goal

“How long will he have to be on oxygen?”

During the year that my son was on supplemental oxygen full-time, I heard this question almost every time we left the apartment. The more I heard it, the more it struck me as an odd question. The answer was, of course, “As long as he needs it.” And the answer to “How long will he need it?” was “We have no idea.”

I suppose there may be cases where someone has a set date – a surgery, perhaps – after which they will no longer need oxygen. For my son, though, the oxygen was not like braces or a cast that would come off at an appointed time.

When we eventually got the go-ahead to try weaning him off oxygen, beginning in the daytime, I found myself being constantly congratulated. “Wow! No more oxygen!” everyone said, beaming. I did not share their enthusiasm. I found myself trying to explain to everyone that 1) he was still on it at night and during naps, and 2) we were still monitoring him to make sure that his oxygen levels were OK, and 3) he would need another echocardiogram to make sure that being without supplemental oxygen wasn’t damaging his lungs or heart.

“But still, it’s a step in the right direction!” they told me. “It’s good news!”

And I’d mumble, “Uh, yeah, I guess.”

Don’t get me wrong – it was much, much easier to do everything without the oxygen. Contrary to what one of my son’s doctors seemed to believe, I did not enjoy carrying around heavy tanks and untangling tubing every five minutes. But the oxygen gave me a certain peace of mind. With the oxygen on, I was fairly certain that my son was getting the help he needed to breathe well. Weaning him off of it meant uncertainty and stress. It meant frequent spot checks and nights with a pulse oximeter’s false alarms. When he passed his overnight pulse oximetry test, it meant fighting with doctors and insurance to keep some equipment on hand for colds and other as-needed situations.* And it meant waiting for multiple follow-up tests, knowing that the results might mean going back on oxygen and that he would be less compliant since he was older and used to being without it.

But other people didn’t see all of this. All they saw was the lack of a cannula in his nose. “Congratulations! Your life must be so much better now.” What they perceived as simple victory was, for me, provisional and emotionally complicated.

I don’t mean to criticize. I never looked at anyone who said this with hard feelings or took offense. What I’m trying to get at is that the experience of actually living with medical equipment is very different from what is perceived by others. Similar to how wheelchair users may perceive their wheelchairs not as limiting but as empowering – after all, it’s the thing that enables them to get around, or makes getting around easier if they are able to walk – equipment such as oxygen and feeding tubes, while they can be frustrating at times, are not destroying quality of life. They are preserving quality of life. Being able to breathe and eat goes a long way towards quality of life.

I think many people look at medical equipment (especially on children) and feel sad and uncomfortable. This leads them to say things like, “But he looks so healthy!” What they are missing with that but is that the equipment is what’s keeping the child healthy. The oxygen is the reason he’s pink and cheerful. The g-tube is the reason she’s a decent weight. Take away the equipment and eventually you’ll have a pale, gasping, emaciated child that fits your image of medically complicated.

Doctors do this, too. One pediatrician told me “He’s breathing well” and implied he didn’t need the oxygen, even though my son was not only wearing oxygen at the time but also making rattling gurgly noises that turned out to be from an undiagnosed airway defect. Another pediatrician told me that we should start weaning him off because it was normal to have sats in the 80s. (Both of these pediatricians were subsequently fired.) I felt a lot of pressure from the medical establishment to get him off oxygen, even when we had a cardiologist saying “Absolutely not,” and I wondered – why? Why is this such an important goal? Shouldn’t the goal be my son’s health? Shouldn’t the goal be for him to thrive?

If he needs oxygen to thrive, then the oxygen is part of attaining that goal, not a barrier to it. And so I find myself fighting, and fighting hard, to keep equipment that everyone else thinks I should want to get rid of.

———-

*So far, since the discontinue order, having oxygen equipment and the pulse-ox at home has saved us two trips to the ER due to colds and one inpatient stay after general anesthesia. And yet his PRN order has been contested at every turn.

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