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."
OH FOR THE LOVE ...
"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.
Oh...here'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...