Wednesday, May 20, 2009

New Person + Memo to Self + Nurse Call

Edited to Add: HI WENDY!!!!

I do not swear very often. Probably S hears the most of my verbal cursing, but it's really not that much. But I have this problem where I mentally swear all day long. My stream of consciousness spews constantly, and it seems like I mentally swear every few minutes. I've really got to cut that down. I censor myself so that it doesn't come out verbally, but I feel kind of scuzzy for swearing (even mentally) all day long. I tell ya, I'm a nut.

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And so I called the nurse for the GI specialist. I explained that when I was told that Julia's white blood cell count is high, I feel nervous & since the next soonest appointment is JULY, I would feel better if I could have an explanation of what's going on with Julia. Totally reasonable, right? I thought so. I was even proud of not even mentally swearing as I talked with her.

What I appreciated was that she actually consulted with the doctor and called me back. That was very nice of her. I found the conversation frustrating, and of course there was lots of mental swearing on my part.

She told me that Julia likely has an allergy due to the presence of white blood cells in her gut, per the doctor. The doctor says we should go on hypoallergenic formula. She's already on hypoallergenic formula. She said we should go to an even more hypoallergenic formula (that you can only order from the manufacturer for $40 for a 3 day supply, but I digress....).

This is where I tried to articulate the problem, all while thinking that doctors and nurses at Children's Hospital may be issued credentials from the Psychic Hotline or something. Not that I'm the smartest person around and am certainly not qualified to be giving medical advice, but follow my logic:

- Julia is almost 1 year old.
- She's eating some "people" food. Starting at 1, "people" food is supposed to making up the majority of her diet.
- She's also underweight. We have to give her high calorie foods to give her the most bang for the small amount she ingests. These tend to be cheese, yogurt (hit and miss), cream, butter, etc.

I tell the nurse the above, and I tell her that it seems to make the most sense to figure out what she's allergic to. It's going to be really problematic if it's milk, but she may be allergic to wheat, gluten, eggs, or something else that is hurting her gut. However, if we know what it is, then we can avoid those foods. And if it isn't milk, then we can try the cow's milk transition.

It just doesn't seem very practical to move her to an even more hypoallergenic formula because she is (hopefully) going to be ingesting more "people" food.

She said that we can start an elimination food diet and see what happens. Again, I try to restrain my mental swearing from turning into verbal swearing. I explain that Julia doesn't display allergic symptoms like eczema or rashes with any food. We only know there's something hurting her tummy due to the endoscopy results. Getting an endoscopy after reintroducing every food is not very practical.

So then she said we can ask Julia's primary doctor for a referral to an allergist. GI specialists can't diagnose specific allergies.

Why does it feel like we have to start all over again? Pending doctor crap for Julia: allergist so we can figure out what she's allergic to, speech language pathologist for a feeding study to see what's going on for all her food aversions, and radiology for a fluoroscopic video swallow study to figure out if anything's wrong with her swallow.

To top it all off, she has a fever and a nasty cough. I am so exhausted from all her medical drama. I know it could be much worse. Really, I do. But these constant issues that even the (supposedly) best doctors in the state can't figure out drives me batty. Or, as Marie would say, I am driving myself batty because of these constant unknowns.

If you would like a slightly spastic but fun kiddo who doesn't like to eat, let me know. Better yet, if you think you can 'fix' her, I'm all for it!

4 comments:

Wendy said...
This comment has been removed by the author.
Wendy said...

Not a spammer! It's Wendy from the Reflux Rebels. The one with the kid who's a day younger than Miss J!

Scrapping in Circles said...

If I were you, I'd just stop giving her formula. Try cow's milk or soy milk instead. I'd move onto people food and see how she does. I dealt with the slow-moving medical train with my little guy and finally had to jump ahead. I had several doctors say, "Your the mother. You see this baby ever day all day. You are the one to best make some of these decisions." Obviously, not if they are life threatening, but if the formula isn't working and people food has already been "okayed" then what's the problem?

Good luck!!!

B said...

Hi Wendy!