Making a list…..


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?




About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.


  1. suzanne says:

    About 10 years ago you were only *authorized* 1 trach nose a month! Really! Who came up with that awesome idea? Obviously someone who hasn’t had the lovely opportunity of watching the side come out of one colored and soaked after one nice cough. (guess we just have to be glad it is out instead of in :))

    Oh and 5 yrs ago in another state you if you had medicaid only you were only authorized 1 trach every 3 months. No backup! You were told to call 911 and go to hospital if you needed an emergency one. That is what the emergency room was for. This state in particular also only authorized 1 vent tubing per month. I met one poor family that by week 3 there was black stuff floating in the moisture in the tubes because of the ash in the air at times.

    I am going to stop now before I get worked up and can’t go to bed.

    good luck with the appeals!

    • Suzanne,

      HOLY H*LL. I’ve had nurses tell me that they had parents who would wash out the trach noses, let them dry and use them again. I’m like……how can does that even work? On the receipt from our DME it used to list each trach nose $5.00 PER NOSE. I noticed last time it was closer to $2.00 per nose.

      Seriously, how hard is it to connect the dots with not enough supplies and sick, hospitialized kids?

      Makes my blood boil.

  2. What size gtube does Parker need. I have a few AMT mini one 14fr 1.2 balloon buttons i would be love to send if they would work. Let me know.

    • Makenzie, I just went to check and then happy danced all the way back to the computer……that the size AND brand Parker uses! But only if you don’t need them, okay? THANK YOU!

  3. As I sit here waiting for UPS to arrive with Jack’s monthly supplies–that they “forgot” to send, so he didn’t even have a bag to feed out of left…


    I’ll tell your our secret weapon for getting what we want. All insurance companies (they don’t advertise this or even tell anyone about it–it’s an insider nursing secret weapon) have case managers. Basically, what you do is call your insurance and tell them that you’d like Parker to be assigned a case manager. She has the ability to override pretty much anything. the insurance company denied Jack’s bed…she overrode it and got it to us. I needed more than 1 10 mL syringe a month, she got me a bunch. A medication is denied, she gets it fixed. She’s our angel. Might want to try…

    • You know there was a time when we’d call our insurance and talk with just one specific person……but then EMIA changed to EMI……I need to call! huh. Didn’t even think about that. Thanks!

  4. Right now we’re playing the waiting game to see if Matt’s gait trainer is going to be approved by our private insurance. We have Medicaid as a secondary, but only until December 31st, because they decided to take it away. Feels like we are trying to play beat the clock.

    • Is it just me, or does it sometimes seem that having private insurance and Medicaid as your back up make things harder? Medicaid totally denied Parker’s sleep safer bed……twice. Finally our private insurance picked it up, but there was still like $500.00 left that Medicaid wouldn’t pick up so our private insurance just ‘ate’ it.

      • For us it’s been more of a blessing to have it rather than a problem. My husband’s insurance on us is pretty lousy. It will not cover hearing aids or speech therapy for Matt, it refused to pay for the helmet he needed for plagiocephaly and the wheelchair was just craziness. They paid for the headrest for it, but refused to pay for the bolt to attach it to the wheelchair along with bus tie-downs and the tray. It delayed him getting his chair for weeks.

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