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.

Wednesday, October 24, 2012

it's a long road

I find that one of the things that most wears me out (and from reading other parents' stories, it wears on them too) is the constant battle when you have a child who's not quite what you expected to get them the things they need.

The school, the insurance, the evaluators who are deciding what help your child gets, the doctors, the pharmacy, the medical supply company (or companies, since it seems like we're in the minority, only having one company to deal with).....every  one of them will require contact most months, some more than once, and that's without anything going wrong.

And most of those places are only open certain hours - usually less than normal business hours, in fact - and that limits when you can contact them. Very few of ours take email even.

And so it goes, week after week and month after month. Usually, just when you think you're kind of getting the hang of it, something else explodes and you have a dozen or more calls to make again.

It's exhausting.

Saturday, October 13, 2012

Trick or Treating at Our House

Halloween is a complicated celebration for us.

We're Pagan, and we're the kind of Pagans who generally celebrate the 8 "Wheel of the Year" solar holidays - and Samhain (which also falls on the night of October 31) is a big deal. Luckily, in this case, most of the more secular celebrations fall in line with things appropriate to the religious holiday, but it does temper the celebration for me a bit, because it's not just about costumes and candy - it's a serious day, and a day for celebrating, and a celebration of the end. It's the last harvest before the winter, and if you haven't got enough put away to last til spring right now, you're probably going to starve to death (metaphorically, for most of us).

We also have two children with special needs.  Sure, there are plenty of cute costumes for kids like ours (we've seen a slew of wheel chair friendly costumes this year, and one year when Acorn was still on a ventilator, we dressed him as Darth Vader (with Live! Action! Breath! Sounds!).

But Trick or Treating is challenging for some kids. There's a whole script for the event to know, and if your child is slow to pick up new routines, that's hard. If your child doesn't talk, or talks only in circumstances where they're comfortable, or is hard to understand, people you meet while Trick or Treating can be very pushy - after all, they're giving your child candy, so they deserve to hear your child ask for it. There's masks and costumes that can be hard for kids with sensory issues, and anxious kids can worry about the others in costume too.

This year things are further complicated by bedtimes that start at 7 pm. Sunset here is at 6:27 on Halloween this year. Maybe we'll hit a couple of houses. Maybe we'll program "Trick or Treat" and "Thank You" into one of Acorn's speaking devices.

Or maybe we'll just stay home and tell stories of our ancestors while handing out treats. It's not like Acorn or Leaf eat candy anyway.

Tuesday, October 9, 2012

It's all about communication

Of course, I'm still in a writing slump, when I'm in the midst of sorting out communication skills for both kids, and in sorting out how to communicate effectively with all our various therapists and educators. Ironic, no?

Acorn's (possibly temporary) discharge form private PT and OT last spring leaves him with private speech, and a psychologist outside of school (plus everyone at daycare). At school, he has PT, OT, speech, a teacher, and a teachers' aide. That's about 12 people we have to keep in the loop every week.

Leaf has PT, OT, and speech privately, plus all three through early intervention, and a teacher. And then we have the nursing staff (currently totalling 9 people).  That's 16 people.

28 people I have to communicate with every week about my kids - and none of those people are related to them, none of those people are their doctors.

It's no wonder that I don't have a lot of free time, even now that the kids are both in bed around 8 pm most nights. The time that's left is time for this introvert to wind down - time I sorely needed before kids, working full time, which makes it all the more important now, working part time, and communicating with the regular staff, doctors (and their office staffs), insurance companies, and caseworkers.

It's a lot to keep track of.