In Search Of Medical Supplies

I posted on our discovery that because Parker is fed a blenderized diet, Medicaid in Utah no longer believes that he qualifies for formula. Because he no longer qualifies for formula, he no longer qualifies for feeding supplies, even though he takes that blenderized diet via his g-tube.  The insane rationalization  of a insurance company trying to cut costs must be a class required to pass before you can work in the industry or something.  Which means that we are now in search of medical supplies

Because it may take up to 60 days for us to receive the results of our appeal, and then if we are denied another 60 days up until all of our appeal are expired, I’m trying to find some of the items Parker will no longer be receiving.

I also believe that this is just the beginning of what is going to be happening with healthcare all across the board and I NEVER want to find myself in this position again.  My Dad totally backs me on this and my parents are both very vocal in me preparing for more of the same with Parker’s other supplies.

Here are the items we are hoping to procure.  Please note, I am NOT asking for money.  Many times families who have children who no longer need supplies offer them up ffs.  (free for shipping)  When Parker had his pull-down surgery and no longer needed ostomy supplies I passed them on for totally free to families still in need of these supplies.

 

 

  • extension
  • Mic-Key Extension Set with Secur-Lok Right Angle Connector and 2 Port “Y” clamp.  12 inches.

 

a g-tube

  • Mini One Balloon Button Low Profile Device 14F x 1.2cm.  We can do any brand as long as it is the 14F x 1.2 cm
  • 4 ft connectors

We are in the process of trying to get Parker off of the Peptin Jr. and back on Complete.  I think we are okay with formula (he needs two containers a night via continuous feeds as he sleeps)  for right now.

Oxygen supplies we are ALWAYS in need of:

  • Shiley Trachs 4.5 CUFFED.  These are as scarce as hen’s teeth.  I can purchase them via my private insurance for $62.00 which is much less than the original $200.00, but still way out of the budget.

Shiley Cuffed Trach

 

 

  • Masimo SET LNOP NeoPt-L neonatal SpO2 adhesive sensor.

 

pulse ox sensor

 

  • 50 foot oxygen tubing

 

  • Fisher & Paykel MR290 LTV vent water canisters for both the vent and trach mask.

water container

  • LTV vent circuits for both the vent and heaters.

Finally, I’ve had a lot of people ask me why I don’t just tell the insurance company that the blenderized diet is no longer working, get the formula and the feeding supplies, and then continue to BD and give the formula away.

First, I do NOT believe that we should have to feed our children real food in secret or be penalized by not qualifying for feeding supplies.   It’s starting to happen more and more not just to our family, but to other families and to other families in other states.

I’m thinking that the insurance companies must be making more money off the actual formula than the supplies?  I don’t know.

I could say I’m only going to formula feed and then just give the formula away. But I’ve spent so much time blogging about the great things BDing has done for Parker, taught others how to BD, etc. So I think it would be kind of funny to suddenly tell the insurance that it no longer works.

Second, and this is where I share a ton of my weird. I spend so much time praying for this kid and asking my Heavenly Father for help and guidance to keep him alive, that to flat out lie would make it hard to continue to do that. Does that make sense? I’m not a perfect person by far, but I figure that have enough issues with faith to deliberately lie about the formula and still get on my knees and ask for help with Parker.

Instead I’m going to work harder and try to grow me some more faith. Having said that, I am by NO means judging anyone who may be doing this exact thing. To let your kid starve because of some incredibly stupid cost cutting measure isn’t right. BDing your child is SAVING THE TAXPAYERS MONEY in both formula costs and health costs/Dr. visits, etc. I just feel as though I still have options and I’m going to utilize those.

About Tammy and Parker

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

Comments

  1. Kerry says:

    Hi.. I belong to a pediatric feeding disorder group and I posted your link about needing feeding supplies. I have people with stuff for you. What is the best way to contact you? Kerry

  2. Tiffany Norman says:

    I have some of these supplies. Please email me at tstarrn826@aol.com. I’m willing to ship and cover the costs. I have a question about the feeding bags. I have some that are not for epump. They will work with the pump pictured above except the tubing from the bottom of the bag to the chamber is short, and can only be hung if you have an IV pole. Again, please email me. I have circuits and chambers as well.

  3. I hav a Joey pump tht we r no longer using n u r welcome to it just email me at jenandlilly33@yahoo.com I just ask if u would pay for shipping

  4. I might have around 30 bags. They were sent to us by mistake and I’ve been holding onto them…not sure if it’s what you need though…I clicked on the link and the picture is not visible. Can you tell me how I can tell if I have the ones you can use? Michelle qltlvr5@comcast.net

  5. Lindsay says:

    I have a pump, pole and several feeding sets to donate, if you haven’t had any luck yet.

  6. Janel says:

    I work for an enteral company. You can ask your current company to donate these supplies while you appeal. My company does this all the time. You can rinse and reuse your feeding bags if necessary for up to 3 days. Your ext sets can be used for up to 2 weeks or until it gets a little hardened. I have contacts for Kimberly Clark, if you need a back up GT or anything else, please email me. I am most happy to help you in any way I can!

    denversavage@hotmail.com
    My name is Janel.

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