Thursday, October 25, 2012

Plastic tubes saved my kids

A while back I started talking about life with a trach, from a parent's perspective. This is a continuation of those thoughts - life with medically fragile children is complicated, folks.

These are photos of pediatric tracheostomy tubes.

Tracheostomy tubes (trachs) come in a lot of different sizes - sizes for very small babies, and sizes for larger adults. Adult trachs are a little different, and I'm not really familiar with them, so we're going to skip talking about them for now.

There are three basic parts to a trach: the thin curved tube that goes from the skin to the airway, the flanges that sit on the skin, and the hub (larger round part) that attaches to things.

That thin curved part is *tiny* - for my kids, the outer diameter of it is 4 mm (about 5/32" for those who think in English units) - the inner diameter is smaller, and clogs fairly easily. When you or I cough, anything we cough up ends up in our mouths, and we usually swallow it (or spit it out if it's nasty).  We blow our noses to clear them. For a child with a trach, they sometimes need help clearing the mucous out of the tube when they cough, so we have to carry a suction pump and special tubes to put into the trach to suction the goo out.

The flanges that sit on the skin are usually held in place with a collar of some sort - the most common ones now are foam strips with velcro on the ends; the velcro goes through the holes on the flanges and then sticks to the foam. Leaf's skin is super sensitive, so we have to keep a pad of some sort underneath her trach flanges all the time to protect her skin.

The hub end is the business end - vent tubing and speaking valves attach to it. Some trachs have longer tubes before the hub. I know a lot of people like them, but it didn't work well for Leaf, so we're back to our old faithful.

Kid's trachs get changed pretty frequently - a monthly change is pretty much about the longest you can go, and most people are more likely to change on a weekly or every two weeks schedule. Sometimes you have to change more often (usually unexpectedly) if the mucous is too sticky or thick, or if they're having trouble breathing.

And sometimes they pull their own trachs out, either accidentally or on purpose. A trach that's out needs to go back in fairly quickly in most cases - besides the fact that it puts their ability to breathe at risk, the hole (called a stoma) can close up pretty fast. Maybe not all the way closed, but enough that the trach won't go back in. And if your child needed the trach to begin with, a closed stoma means going back to surgery to put the trach back in...probably on an emergency basis.

And since most kids with trachs have some sort of respiratory issue...knowing how to do CPR is important.  I have one lots of those blue bags you see them using on hospital shows to breathe for people, and I know how to use them. I've watched my kids turn blue (Acorn used to turn blue daily), and I've used that resuscitation bag to breathe for them until we can get them breathing on their own again.You can't just breathe through their mouth - you have to breathe through their trach. can't just drop a kid with a trach off at any babysitter's house. You need someone who's trained to do the suctioning and putting trachs back in, and changing out the ties that hold them in place. Insurance companies generally pay for a nurse to take care of children with trachs, but if you hadn't heard, there's a nursing shortage out there. Hospitals pay better than home care, and finding someone who knows what they need to know can be tough.

Family and friends can learn to do all this stuff, just like we did....but most won't (and that seems to be true across the board, from what most trach parents I know have said). It's a lot of responsibility to take on, and a lot of scary possibilities.

But...these little pieces of plastic save lives. Kids with trachs live and grow and thrive, which the vast majority of them wouldn't do without a trach.

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