A privileged whine


First of all ou foster baby  is fine.  She’s fine, I keep telling myself that.  She is fine despite the fact that I think she is getting inferior medical care.

All foster children are automatically enrolled in medicare.  This is great because we are not allowed to add her to our insurance unless we adopt her.  However while I believe her doctor wants the best for her I also believe she is too busy, too underpaid, and too bogged down by the system to really care.

She was born with a an under-developed digestive system.  It’s all there, it just wasn’t operating at 100%.  This is in part due to her being premature and in part due to things she was exposed to in utero.  This means she has gas and pain along with diarrhea. Poo-tastic.

I have consistently asked them to test the baby, do some blood work, look at her GI track.  Anything to figure out why she is having up to 6 hours of intense pain that ends in explosive diarrhea.  The response I got when I asked for a blood test for milk-protein allergy was this “Well that requires us to draw blood, you wouldn’t want us to stick her with a needle would you?”

Yes.  That is EXACTLY what I want you to do because I am a terrible Foster Mom that wants to cause her child momentary pain to do a test that could result in her stomach pain being relieved completely.  I KNOW!  SOMEONE REPORT ME TO THE AUTHORITIES.

I just could not believe that was what they said to me.  But still, they refused to do the blood test.  Instead over the past 8 weeks they have changed her formula 4 times.  Let me say that again, FOUR TIMES IN EIGHT WEEKS.  Imagine you only ate one thing, day in, day out, but your doctor kept suddenly changing it so that it threw your digestive track off each time and your body was forced to readjust to the new version.  Imagine your digestive track was already not up to par.  Welcome to Tess’ world: gas, pain, diarrhea, constipation.  The poor kid has been through the wringer.  All because Medicare doesn’t want to pay for a blood test.  Not to mention that Jacob and I have also had to clean up our fair share of poo-disasters these past few weeks.

So I have been rather desperate to try to find something to give the kiddo some relief.  I knew if she had been able to breastfeed her digestive track would have been much better off.  But she couldn’t for obvious reasons.  That’s when I learned about the Mother’s Milk Bank.  There are 10 milk-banks in the U.S. that take donations of breast milk for infants that need it.  This milk often goes to micro-preemies and preemies and infants born with medical conditions who cannot nurse.  The more I read about it the more I felt our foster baby could benefit from this.

In fact, she had been eligible while in the hospital to receive this milk, but none of her doctors knew about the program.  Sigh.  Medicare.  Sucks.

So I brought this idea up to her pediatrician.  Not only for her digestion issues but because of the immunity benefits and the key fatty acids that are in breast milk.  Fatty acids that have been shown to HEAL brains that have been damaged.

Tangent:  remember that miner who was trapped in the coal mine for a really long time?  He was the only survivor of the blast but was in a coma and doctors said his brain had sustained damage due to a prolonged time without oxygen.  Well one of his doctors, having tried everything else,  on a whim started giving him massive doses of fatty acids and put him in a hyperbaric chamber.  The guy woke up, with NO brain damage.  Fluke?  Maybe.  But it certainly didn’t hurt him.

Ok, so back to the pediatrician, I bring all my data on the importance of fatty acids, immunity, and the fact that breast milk is about a million times easier to digest.  Her response?  I SWEAR to you this was her response as she is holding the kid in her arms “Well, I am always wary of biological things”.  I looked at her and said, politely, “Well I don’t want to alarm you but you are holding a biological baby right now.”  That actually snapped her out of her stubbornness a bit.  She finally agreed to write me a prescription for it as long as I looked into it thoroughly to make sure they screened the donor Moms and the milk.  I then told her that she worked for the hospital system that runs this program and screens it in their labs.  OY-VEY.

So, happy ending, finally.  We got breast milk for the kid, and they actually donated 2 weeks of it for FREE.  YAY!  I know this probably grosses some people out, but I DON’T CARE.  This is what is best for the kid.  And, BTW, breast milk donations are screened more strictly than blood donations.  Think about that.  To learn more about this go here:

http://www.clarian.org/portal/IMMilkBank

This donation has been a true gift.  The cost of feeding her for 1 day is $108.  So this 2 week donation is truly priceless.  And 2 weeks is the minimum they say babies need to receive the vital immunity properties from the milk.  So at least we can provide her that.

I know that for a lot of people medicare is the only system they have ever known.  I know I am EXTREMELY lucky to have excellent private insurance that provides amazing coverage and access to fabulous doctors.  I know.  And I know a lot of kids receive great care through the medicare system.  But I can tell you that our (foster) kid is not receiving the care she needs.  And that is hard to watch knowing we can do nothing.  So thanks for indulging me in this privileged whine.

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4 responses to “A privileged whine

  1. I would Love to give you mine it you weren’t so stiken far away. I would just say though that I wouldn’t expect that gas to go away completely cause the donors might still be eating dairy which won’t be as bad a formula but not get rid of the gas. Take you hand and gently rub it clock wish around her belly. That might help her a little too

  2. Dear CJ,
    Tess’ problems (and yours) are ‘way more serious than those I encountered with my son Kim when he was just a few weeks old: terrible colic, diarrhea, and projectile vomiting. You maybe already know about this strategy for giving your baby some relief. Lay Tess face down (support head if necessary) across your knees and softly bounce so that her gut gets a gentle massage. Doing this seemed to help Kim expel some gas (his digestive system was apparently a bit underdeveloped) and he didn’t scream quite so much, which helped me cope too.

  3. Good luck on this one. In our case, we have learned the hardway that we can pick up and look for other doctors. If you have the flexability, I would call and ask if they are willing to do this test on the first visit. Again, thank goodness that you are willing to advocate for this kid that obviously needs some serious relief.

  4. Pingback: I love your child… « Methodist in-Formation

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