Friday, July 8, 2011

A MAJOR Wrench In the Plan

Bossy has a feeding tube, and has had it since he was 5 months old.  He will be 9 next month. 

On a monthly basis, we have to order special formula, tubing, and misc supplies.  Our insurance picks up 90% or so, which leaves 10%....or about $250 a month.  We have had a financial hardship waiver for years.  Our debt to income level was high enough that the supplier waived our 10%.  But that has come to an end.

The supplier called this morning to tell us that their internal changes have capped the income level at $27k per year to qualify for assistance.  So, now we will be responsible for the $250, oh, and all the charges that were pending while they figured it all out.

They are willing to set up a payment plan, however they aim to have a balance paid off within 6 months.  The best we can tell, this would mean a minimum of $50 a month, once the current balance is paid in full (which is over $1000 now).

This is a HUGE blow.  We have to sit down with the budget yet again, and figure out where to pull from.  Mostly it will come from the extra debt repayment money.  The quick answer....we need more income.  Overtime, selling stuff, whatever.

Part of the reason we are where we are is from the medical stuff.  We spend over 15% of our income just on medical. 

Bossy does eat orally, just not enough.  When you have a child who didn't eat at all until he was 4, almost is a long road.  Add in the Autism.  Add in the new revelation that he doesn't understand smell.  And we are fighting an uphill battle.

This blows. 

I looked at state benefits, and the only program we would qualify for is $200 a month.  Well, if I am going to pay the state $200 a month, then I can pay the supplier $200 a month and save myself the middle man.  

Frustration doesn't even begin to describe this.


  1. I am so sorry. I have a low-dose chemo that I take sub-q once a week and it is $500.00 a dose. So $2000.00 a month. I am on a plan that allows the drug company to pay half. Well this summer they ran out of funds. So I have to come up with an extra $1000.00 a month for three months. People who do not have huge medical issues will not understand that it is always something and it never goes away. I pray that he starts to eat more as he gets older. If would be so nice if you could get rid of the tube. But I know it will be hard work.

  2. It's these 'small' digs that really mess up a budget. As you well know, when we're reined in as tightly as most of us are budgetarily these days, it doesn't take much to throw everything out of whack. I just found out my office will no longer be subsidizing our bus passes. Good-bye $25 passes, and here comes the new $77 expense--for a net hit to the budget of $52 a month. Arrgh!

  3. I can so relate to this and my heart breaks for you. We, too, spend more than 15% of our income on medical expenses. Kim is right - unless you've been there with the enormous medical costs and the emotional toll you'll never understand how terrifying and frustrating and neverending it is. Prayers and hugs to you.


  4. So sorry you are going through this. I'm one of those who wouldn't be able to understand how taxing medical issues are on a family in all areas. But I can appreciate that it is a substantial amount of money to now have to come up with and deal with the new debt on top off. I hope that something wonderfully unexpected comes to off set this expense in a miraculous way.

  5. Mysti,
    I'm so sorry. I can relate by being a Mom and what an emotional toll that must take. Add in the financial, and well, it can be overwhelming to say the least. You may be surprised to find the money by re-budgeting a bit. Hopefully, this will pass and Bossy will be able to eat normal and the tube can be gone.

  6. Wow... I am stunned. Truly stunned. As someone that works in the health care industry, I am forever frustrated at the high cost of medical care.

  7. Thanks all. It is what it is. I am trying to find a silver lining, and that is if I can find $250....and then get him off of the "tubey," then that $250 goes back into debt repayment.

    We will get there eventually. I just wish it wasn't SO hard!

  8. Is there another supplier? I'm sure you've considered that, but I thought I'd throw it out there, just in case.

  9. Have you considered any holistic remedies? If he doesn't have a good sense of smell, some may not work. You seem to be good w/planning & research, so I imagine you'd find something in costly, non-Western medicine that will help the situation. Good luck :)

  10. @Sass - no other supplier that has this formula.

    @Anon - we are actively working on the smell issue. It isn't that he doesn't have a good sense of is that he doesn't understand it, and it's connection to taste. He never learned it as a baby. It is actually teaching him what it is, not that he can't do it. I know it sounds crazy since most of us understand it. But he actually doesn't get it.

  11. Mysti...

    Would it be worth a trip to your state office people and see if there are other helps you can qualify for or apply for? Maybe there are camps or day programs out there that you could benefit from...

    And...I was wondering what the chances are that Bossy will be able to get off the feeding tube anytime soon...

  12. @Julie - most of our state programs are out of money (I work for a state program....). As for camps or day programs...we are all set there.

    Getting rid of the tube....not going to happen anytime soon. He does not eat enough to sustain himself. He received between 1200-1400 calories per day by tube.

    Basically to get rid of the tube, he has to eat enough to sustain himself and continue to grow on the growth curve. Once he is eating and growing without the tube, we have to wait 6 months, preferably through a winter season, to make sure he doesn't backslide. The winter is high time for illness, so it gives him the chance to "get sick" but show he will still eat and not go back on the tube. Once he passes all of that, he will need day surgery (it will be his 9th surgery) to close the tract. He has a clear hole from the outside into his stomach.

    So this isn't something that is done lightly.

  13. No...not taken lightly at all! I wonder if you call the supplier and try to talk to as high position person as you can and put up a stink about having to pay all those pending charges. Tell them your doesn't seem fair that you should have to pay that big lump sum. I wish they would reconsider waving the fee too...but I would at least try to get the pending charges waived...

    Just some thoughts...

  14. First off- I've been reading your blog the last week or so and I'm really enjoying it!
    My youngest daughter has had a feeding tube for the past year (she's 2) and we are fortunate that our we qualified for the supplemental medicaid since she has SSI. They pay for her formula 100%. Which formula is he on?

  15. @Julie - already talked to the go.

    @Jess - welcome! We didn't qualify for SSI due to our income level, and the only supplemental medicaid we can get is over $200 a month...and we don't get much more than what we already have.

    Bossy is on Compleat, by Novartis. It is a blended food formula.