I remember feeling a little bummed when my older kids were younger and wanted things that were simply beyond our budget. I’d eventually get over it, and more times than not, they’d eventually forget that they even wanted it.
It’s different with all the medical paraphernalia that Parker needs on a daily basis. A trach isn’t like a video game. A video game is a want. Trachs and g-tubes? Those fall under the heading of necessity.
Big time necessity.
I’ve had to work to get the four trachs a month that the infectious disease doctor insists Parker needs. It’s pretty much impossible to safely clean a cuffed trach at home. With Parker’s history of pseudomonas, this doctor insists that Parker needs a sterile trach after each trach changes.
And then there are the trachs who meet an untimely end when Parker reaches around and pulls off the little balloon in the back.
Alas, we are starting to get the stink eye about this. And all parents know that the stink eye leads to a little letter stating your child’s new limits on frivolous items such as breathing supplies.
Usually I’d turn to the Special Needs Underground in trying to procure more trachs. Except Parker’s trach is cuffed and has to be a certain size……which makes trying to find them like hunting for hen’s teeth.
This is kind of like the trach Parker uses. Except his is a Shiley.
The cost of each trach? Close to $200.00. For a piece of plastic with a teeny little balloon on the end. Which means I now need to come up with some pretty significant dollars each month.
For a mere $203.95 this little beauty could be YOURS!
We won’t even go into the war called trying to get an extra g-tube. We only get 4 a year. FOUR. Considering the failure rate of these things right out of the box, along with one very active little boy, depending on four g-tubes to last an entire year is ridiculous. Some where some genius decided that a great way to save money would be to limit the amount of g-tubes they would cover. Because g-tubes have such an awesome street value, don’tcha know.
I need to grab some of those too, just as soon as we win the lottery over here.
One good huck of snot, and this sucker is history.
Tomorrow I’ve got to call about the trach noses Parker uses. Ever since his last surgery Parker has been going through trach noses like crazy. I mean wetting them to the point of having the white part simply fall out and fall apart. We need at least an extra box a month. I’m actually kinda scared to find out what my insurance says about this. These little bits of nothing run cost a small fortune. And Parker hacks his way through 5-8 a DAY.
I’m going to have to begin some appeals……..I might even have to break out the big words like ‘lawyer’ and ‘EPSDT‘ But that is going to take some time, and I’ll need to get my hands on some extras before, you know, hell freezes over.
What are the odds that Santa has a medical supply department in the North Pole?