Thursday, February 16, 2012

Moving Targets, Changing Rules, and a Frustrated Mama

It's 1:30 am, and I'm wide awake. I feel asleep a little after 9 mentally drained and now I can't turn my brain off.

Two days ago, we did a weight check for Xander so I reported it to the nutritionist at DuPont along with the foods we've been able to add back in.

And somehow in less than 10 days our targets moved. See, it is perfectly alright for DuPont to discharge him on only pedialyte, apples, plain white rice, bananas and saltine crackers. At our last appointment we were told we had to get him off of pedialyte and while coconut milk wasn't her first choice (soy was) that she would be happy as long as he is off of pedialyte. She even suggested that we flavor it with syrups.

Insert, the moving target. Coconut milk was frowned upon when I reported it back. Instead I was sung the praises of soy. Nothing else was acknowledged.

Anyone remember why we can't try soy?

Oh that is right! We have an intolerance issue and besides he won't touch the stuff with a 10 foot pole these days. He also won't touch rice milk, or formula or a thousand different foods.

Supposedly this nutritionist also works with the allergy clinic, but she can't seem to understand that Xander has a real problem with soy.

So I responded with a heavily edited return email. Yes, I actually took the time to take out the sarcasm, frustration and emotion from the letter and reminded her that we have issues with soy, that we are confused because at the last appointment she stressed the need to get him off of pedialyte and told her we were frustrated that we aren't getting more encouragement since nothing was addressed other than the coconut milk.

That email was sent on Wednesday afternoon and I've yet to receive one in return.

Sigh... just another letdown from the medical community.

Let's talk changing rules. Xander changes what he will actually eat from day to day, but cannot effectively communicate this to me. He communicates but unfortunately, no matter how long he does it, screeching, screaming, crying and flailing about just is impossible for me to decipher. One day chicken is fine, the next day he won't touch it. One day rice is fine, three days later he won't touch it.

But he has halted on trying new foods as well. So the foods that have been our standby in the hospital and at home are now touch and go. And somehow I'm supposed to watch this, live through it and be okay with it.

Not happening.

So instead we get a frustrated mama. A mama that cries bucketfuls of tears. And yet, STILL, no one will help us.

Tonight in a moment of desperation, Brandon called the on call for our gastro at DuPont. We were told that if he won't eat or drink that we should take him to the ER. Brandon explained that Xander is not dehydrated and he was discharged like this (actually in worse condition.)

And somehow, the gastro on call couldn't get it through her thick head that no matter how many thousands of dollars in medical bills we have, and how many ER's we go to, NOTHING ever seems to change. We NEVER get answers. In fact, every time anyone medical does anything, he ends up WORSE than when we started.

Her advice? If you think he needs seen now, go to the ER.

Nice.. another broken record.

So now, our gastro is supposed to call us in the morning. I don't know what he intends to do or what he will say. Afterall, EVERY expectation or goal or whatever set by these people changes without our knowledge and yet NOTHING continues to be done.

And I can't get anyone to understand that we are NOT okay with that.


I refuse to believe that we are the only parents out there that are upset that we can't find help for our son.

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