Monday, June 4, 2012

Let's Talk Trachs

Since it's Birthday Bash, it occurs to me that I ought to talk a bit about this trach thing, and what it means around here. Everyone outside of this special club of trach families seems to have their own opinions of what it means to have a trach, and most of those opinions are dead wrong.

First, having a trach doesn't really tell you anything beyond the fact that the child who has it needed a stable airway. It doesn't say anything about their cognitive development, physical development, immune system, or ability to breathe without it. Maybe there's something structurally wrong with their airway. Maybe their brains forget to breathe. Maybe there's no room inside their ribs for them to breathe on their own. Maybe there's a problem with their lungs. Maybe there's a problem with their diaphragm. I'm sure there are other reasons too, but on the rare occasion you meet a kid with a trach, please don't make assumptions.

Around here, Acorn and Leaf's trachs were both because of Bronchopulmonary Displasia (BPD) - the need for oxygen past an infant's due date. This illness is also known as Chronic Lung Disease (CLD) or Chronic Lung Disease of Infancy. In any case, the long and short of it is that their lungs were damaged because they were premature - the little sacs in their lungs that do all the oxygen exchange are trashed...permanently. The current theory is that it comes from being on a ventilator as a preemie, but as more and more pregnant moms are getting steroids before delivery, there's a new crop of BPD kids who, like Leaf, were never vented as neonates, and yet they still develop the same symptoms, so there's now some suspicion that it's not just the vent that causes the issue, but that the damage is maybe there for kids with breathing difficulties from the get-go.

Acorn, 2 days old.

So if it's a permanent thing, why do kids eventually get off oxygen (if they're a more typical preemie with BPD), or off their ventilators and oxygen and get their trachs out if they're special like my miracles?

Well, in case you haven't noticed, babies are small (and preemies are even smaller) - their lungs are not as big as an adult's. As they grow, their lungs grow with them, making new lung tissue that isn't damaged. Those damaged spots, though, will always be there - we can see them in Acorn's chest x-rays when he's sick. See the x-ray below from Wikipedia? See all that sort of streaky hazy stuff in the lungs? That's what BPD looks like.

Image courtesy of Wikipedia

So, then if having a trach doesn't mean there's anything wrong with a child's immune system, why all the effort to avoid germs?

It's like this:  If you break your leg, are you going to throw away your crutches the next week and run a marathon?  No, of course not. Similarly, kids like mine are already struggling to breathe. They're at a disadvantage, because their lungs are not healthy and strong. Keeping them healthy now means that they have time to grow stronger before having to fight off some illness. All those streaks in that x-ray? Those are parts of their lungs that don't work, so a small child like Leaf probably only has half the working lung tissue she ought to have, and that makes it just that much harder to deal with the consequences and symptoms of an illness.

Furthermore, having a trach does bypass some important parts of the body's immune system, like the nose. A trach is direct access to the lungs, right into the place where germs can cause the most havoc.

On that front, I'm going to go a bit political and bitchy:

Vaccinate your kids.


The whole concept of herd immunity is that even if a vaccine isn't 100%, when most everyone is vaccinated for an illness, there's no easy place for that illness to take hold and become an epidemic. Even people who aren't vaccinated are less likely to get the illness, because there's fewer active infections to pass it on to them. Vaccinating your kids helps protect kids like mine (who are vaccinated, by the way), and that's important, because the kinds of things we vaccinate for are the kinds of things that would be lethal to Leaf right now, and would likely land Acorn in the hospital for a long time.

Shoot, the 90 day PICU stay Leaf had this winter which included getting a trach because we couldn't wean her off the ventilator she needed when her lungs couldn't cope with the illness was caused by a run-of-the-mill enterovirus - and rhinovirus, the common cold, is just a subset of the enterovirus family. Acorn spent 4 days in the hospital with that same illness, on as much as 4 liters of oxygen.

Anyway. More posts to follow, talking about what sorts of things we do around here that people without trachs don't do. Be well everyone.

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