everything is possible... the impossible just takes a little longer

slow and steady wins the race

Thursday, May 14, 2009

Look what the man in the little white truck brought

Each and every month the white delivery truck shows up and unloads this mountain of supplies for Sam.  Sam's monthly care package includes 7-8 cases of formula, 3-4 cases of diapers, syringes, extension tubing, suction machine canister and supplies, split gauze, wet-proof and clear tapes, 6 tubes of Critic Aid skin paste (for his on going horrible Hirschsprung's diaper rash), 30 feeding bags and every 2 months a mickey button replacement. And each and every month we pay the man in the white delivery truck $411.07 (ouch!) ... the portion that our insurance does not cover after deductibles and all that. Diapers, even though Sam requires them because of a medical condition ... Hirschsprung's disease and as a result virtually no large intestine... our insurance considers them a "comfort" item and does not cover this much needed item. They also only cover a small portion of his enteral formula.  Sam does not qualify for SSI, MR Waiver, public aid or other services out there.  Believe me I try... and try... and try.  I guess I should be thankful that he is still covered under our insurance plan but the down side is that these items would be covered if he qualified for some of these other services. 

Why don't you use pull-ups or a less expensive diaper you ask.... Well... bottom line... pull-ups don't hold poop!  And why do you get so many diapers??? Well... because Sam has only a tiny bit of large intestine left (everything from his appendix down is gone) he poops very very often and his stool is very very loose... that is just how it is.  

The other item that we pay out the nose for is his formula.  Sam is 100% g-tube fed and this formula, which is actually one of the cheaper ones out there, is his sole nutrition.  Our insurance company has decided upon an amount that they will agree to pay for his formula. However at that price our DME company (the owners of the white van) would actually loose money and therefore tell us... "Sorry, but we don't carry formula at all".   But we love the owners of that little white van and they have made an agreement with us that they will accept what insurance will pay and we pay for the rest. This way we get a little bit of a break instead of having to foot the entire bill.  

This is just part of our normal routine and an occurrence that happens without fail.  Skipping a delivery is not an option... we just might have to pick our favorite child and only let that one go to college but sometimes you just have to do what you have to do...LOL (that was a joke people). Someday, in the not so near future, Sam will be eating and will have bowel control and not needing his monthly delivery from the man in the little white truck... but for now remain dependent on them. And as much as I cringe every time I write out that check... I am also thankful that Sam is thriving and in the whole grand scheme of things it is a rather small price to pay.   But it is kinda of like special programs at school... when bills have to be paid it is the fun classes that get cut first.  So although $411.07 each monthly necessity, I do wish that I were using that money for fun things for Sam and not diapers and formula.


Leah said...

O...M...G!!! You need to move here! Waivers here are not income based, they are need based. For a child with significant medial issues, there is no waiting list. Enteral formula is covered 100%, and there is no limit to g-tube replacements. If it needs to be replaced, then so be it. (Angela went through 3 in a week once.) As much as I hate the winters here, I'm NEVER moving as long as Angela needs the services she does!

rae said...

Yea... we could move just about anywhere because Illinois is scraping the bottom of the barrel. Sad but true. I should be thankful that we do get covered what we get covered as we could be paying soooooo much more. There are some instances where medical issues over-ride income in IL but only if Sam were on oxygen pretty much all the time.... 100% g-tube fed is not considered "technology dependent" in IL. I hear MN is nice :)

Aimee said...

Doesn't it just kill you how much medical stuff costs?? You are most certainly on the ball with all of this - it can be so overwhelming!

We tried to get help from the insurance on paying for his preemie formula - even got an Rx from his pediatrician as you suggested. Unfortunately, there's no insurance benefit with our plan for anything that can be purchased OTC. Oh well... we tried!

BTW, when Connor kept having his bad diaper rashes in the NICU, our neo suggested that the nurses wipe him with Baza wipes: http://www.us.coloplast.com/ECompany/USMed/Product.nsf/(VIEWDOCSBYID)/393B50C5249CFB17852570B4007B18B4?OpenDocument
and follow with the Critic-Aid Ointment. (I've seen them online for as low as 88 cents/pkg - they come as 3 large wipes, and we would cut them down to fourths.) The 2 products together really seemed to help his bum heal up fast.