Sunday, September 1, 2013

Where I've Been

Every month for the last two years I've gotten the same phone call.

"Hi Noelle.  This is _____ , pharmacy technician for Intermountain Home Health Care, calling to go over your order for Emily's feeding supplies."

We go through the list and on occasion I'll change the number of syringes they send, just to keep things interesting.

I got my usual phone call two weeks ago but this time there was a twist.

"Noelle, the formula that you've been giving to Emily has been discontinued and our dietitian will call you to go over the options you'll have for a different formula."

"It's been discontinued or you've stopped carrying it?" I asked.

"It's been discontinued.  You won't be able to find it anywhere except maybe Amazon, but that will only be until they run out."

Oh for the love... that's what I was thinking.

After hanging up from that conversation I called Gerber, the company that makes Em's formula.

"Can you tell me if you've discontinued this formula?" I asked.

"Hi thank you for calling.  I can help you with that.  No."  That is the conversation I had with the Gerber company.  Word for word."

"Do you have any plans to discontinue the formula?" I asked next.


Oh for THE LOVE... that's what I was thinking next.

I called the home health company back and asked to speak to the same technician.

"Gerber is not discontinuing the formula," I told her.  "Can you tell me another reason why your company would choose to no longer carry this formula?"

"Oh ......... (long pause) ..... I'll have to call you back."

She did call back an hour later with a new explanation.

"The formula you have been using is one we have to special order - we don't keep it in stock normally. Now that Emily is two we feel that she is old enough to use other formulas - those that we keep in stock.  It will save us a lot of time and hassle to send out formula that we already have."


"And you made this decision without thinking to talk to me first?  Without talking to Emily's GI doctor?  Without taking to her pediatrician?  Without talking to anyone who knows anything about Emily?"

"Well, our dietitian will call you in the next day or two and discuss your options with you."

"What if I don't want another option?  What if Em's doctors don't think another option is a good idea?"

...long pause and then, "I'll have the dietitian call you.  I'm sure you'll work something out."

Three days later when the dietitian called I had a similar conversation with her, only I added a few more details.

"Do you know that Emily spent three months in the hospital because her gut didn't work?"
"Do you know that Em's gut couldn't tolerate food at all?  That she was given nutrients through an IV to bypass her gut altogether?"
"Do you know that my daughter went through hell for an entire year because she couldn't tolerate the most basic, elemental, easy to digest formula that there is?"

"And now that we found something that works you're telling me you're going to switch it?  Because you don't want to fill out the paperwork to get it ordered?"  "And you were going to switch it without consulting a single doctor?"

World, I was NOT a happy customer.
I didn't raise my voice - not once - but I did have a tone - a strong one.

The dietitian switched the formula anyway - and she sent the new formula out with instructions on how much to give Emily.

The calorie content jumped significantly - and the volume increased too.

I called both the pediatrician and the GI doctor to ask for suggestions.
The pediatrician was appalled that they would make a switch, and the GI doctor was okay with giving it a try.
But both of them told me to dilute the formula - to give her less calories than the dietitian had suggested.

We tried it for a week.
In the middle of the week the dietitian called to follow up and when I told her what we were doing with the feeds she was bothered.
"I don't pull these numbers out of my head," she told me.
"They are the guidelines that we follow for all of our patients.  These guidelines are tried and proven."

Tried and proven on someone other than Emily and her sensitive little tummy.

But by the end of the conversation I felt like I had been wrong for disregarding the dietitian's guidelines and Jason and I agreed to try her suggestions for a day or two.

A day or two was all we lasted.

Our poor girl has been miserable.
Not only was she throwing up, but her gut stopped working.
She couldn't digest the formula we were giving her - her body simply couldn't handle it, and by the fifth  day of the new formula Em was exhausted from the effort of trying to manage the change.

Last night Jason and I switched back to the other formula, the one that our little lady was thriving on.
On Tuesday I will email the home health company and express my frustration about what I feel is a total lack of professionalism and concern.
In fact, my dad told me that I had better read them the riot act.
If after all of that, they are still not willing to work with me on the formula I will call and ask that the GI doctor fight this battle for me.
If that doesn't work, I will call the insurance company and ask if we can bypass the home health care company completely.
And if they say no and tell me they won't work with us...

"and if that billy goat runs away..."

Well, at that point Jason and I will work Em's formula costs into our budget, and we will tell the dietitian to take a hike.
And maybe we'll even have a tone when we tell her that.

It's been a long week World, and this Momma can barely keep her eyes open.
Em is asleep next to me, and now that she's back on her magic formula she will sleep through the night peacefully.
She needs it.
I need it.'s one other thing.

During one of our conversations, the dietitian said to me in a surprised voice, "You seem like you have a very hands on approach in regards to your daughter's care.  I guess you like to know what's going on?"

Oh for the love...


Anonymous said...

Go get'em. They shouldn't be able to do that!

Leslie Burnham said...

It's good that you are keeping track and documenting the conversations you are having with the reps from the agencies you must work with, along with the effects on Emily. It is amazing to me that they have so little awareness of the needs of their own client. It seems criminal to me, but having worked in this area for almost 20 years, I am sorry to say I am not surprised. You are the very best kind of mother for your child, able to get your point across in a firm and non-hysterical manner. I wish you the best, as well as the very best for Emily. I know no one has to tell you - never give up.

Sandra said...

I hate dealing with impersonal home health or insurance companies and their one size fits all policies. Emily is a person not some statistic and as a mom you know best.

And hands on? What she expects you to plop her in a crib and ignore her?

Want me to fight this battle for you? Iv'e gotten good at it through the years.

sean's smitty said...

Oh Noelle! , I am fuming along with you! It's so frustrating when pediatric medical service providers don't give deference to parents' knowledge of their children and their needs. What a frustrating situation! I know how you hold your breath that your child will keep her nutrition down and once a balance seems to have been achieved you barely dare to exhale for fear of tipping the balance.

I frequently check your blog for updates so I may know how I can pray for you. I will pray for God to soften the heart of someone at the med supply co and give them understanding regarding your situation so that you can continue to feed your precious girl the formula that has been good for her.

I pray for you, too. For grace and strength and emotional healing.

-Heather in Philadelphia

Mr. Thompson and Me said...

It's only 7:49am And I've already used this quote 5 fives. (not a good sign for my day ahead.) Here goes #6...

"Life is tough bit it's tougher when you're stupid.". John Wayne

They are all stupid. Go with YOUR gut because it's working just fine and until Em's gets fixed - she needs it.

P.s. I have your back.

Shan said...

I'm going to stick with your line, because the curse bubble floating above my head right now is *really* unattractive.

Julie said...

GRRRRR!!!! I don't think I'd be that great on the phone. I'd had to show up in person and than the policeman would be taking me away. You did awesome. Good luck with everyone listening and doing what's right for Em.

Of One Heart said...

I have more foul words than you would permit me to use on your blog. Tell me that company could see some sense, please.