Tuesday, January 26, 2010

The Hard Stuff

I am having a hard D day today.

Emotional.
Hormones?  Maybe.
Diabetes?  Most likely!

It's hard!  It's hard!  It's hard!  It is SO hard!  No one told me it would be this hard!

We are having awful, terrible, sickening numbers.  All over the place - from 523 to 47.  I know it hurts.  It feels bad and it must be awful.  Why can't I just take it away?  I would trade places if I could.  Oh, how I wish I could take his place.

I'm frustrated.
Diabetes?  Yes.

Children's Hospital Dallas Endocrinology?  YES!

CIGNA?  Yes.

CAREMARK? Yes.

Here is what Nate looks like to Children's Hospital:

Sometimes they see him like this:
Here is what Nate looks like to CIGNA:
U35XXX911 05

And to CAREMARK:
173000062004


Here's what he is to me:
 
He's my son.  My precious, precious boy.  He is just a baby and he needs help.  I need help.  Our family needs help. Why must it be so difficult to help us?  He is not bar code,  a dx date, or an ID number.  He is my son!

I'm so frustrated with Children's and their Certified Diabetes Educators (CDE).  There are so many of them and none of them seem to care that Nate is 19-months old. Nobody there actually knows who Nathan James Houston is - to them he is just a bar code and a diagnosis date!  We get a message from one CDE one week and the very next week another CDE tells us we should never have done the very thing that the last CDE told us to do.  REALLY?  

You cannot treat a baby the same way you treat a child, a teenager or a young adult.  It doesn't work.  I cannot force Nate to eat, I cannot get him to pee on a test strip and I will not continue to let his bg be so out of control!  I cannot figure out his insulin requirements on my own and all I get is frustration when I ask for help.  Is it to much to ask for personal care these days?  Is Children's so big that they no longer care about the individual patient?  Is it really all about the bottom line?  

It is hard to have a sick child.  To know that he will never be better.  Diabetes will always be with him.  It is hard to be a parent of a sick child and to have to deal with the bureaucracy of insurance, hospital billing and RX limitations.  


If only we could humanize these companies - if they could only see our children as children and not bar codes and ID numbers.  

Nathan James Houston





 
  










This is my son, Nathan.  He has Type 1 Diabetes and he needs a little bit of help and a lot of compassion.  
Is that really so much to ask?

Today has been a hard D day.  I am hoping for a better tomorrow.






 ___________________________________________________

 Here is what Nate feels like when his bg is low -
Mild hypoglycemia
Symptoms of mild low blood sugar usually occur when blood sugar falls below 70 mg/dL and may include:
  • Nausea.
  • Extreme hunger.
  • Feeling nervous or jittery.
  • Cold, clammy, wet skin and/or excessive sweating not caused by exercise.
  • A rapid heartbeat (tachycardia).
  • Numbness or tingling of the fingertips or lips.
  • Trembling.
Moderate hypoglycemia
If blood sugar continues to fall, the nervous system will be affected. Symptoms usually occur when the blood sugar falls below 55 mg/dL and may include:
  • Mood changes, such as irritability, anxiety, restlessness, or anger.
  • Confusion, difficulty in thinking, or inability to concentrate.
  • Blurred vision, dizziness, or headache.
  • Weakness, lack of energy.
  • Poor coordination.
  • Difficulty walking or talking, such as staggering or slurred speech.
  • Fatigue, lethargy, or drowsiness.
Severe hypoglycemia
The symptoms of severe low blood sugar develop when blood sugar falls below 35 mg/dL to 40 mg/dL and may include:
  • Seizures or convulsions.
  • Loss of consciousness, coma.
  • Low body temperature (hypothermia).
Prolonged severe hypoglycemia can cause irreversible brain damage.
____________________________________________________

And when his bg is high -

  • abdominal pain
  • nausea and/or vomiting
  • fruity breath odor
  • rapid, deep breathing
  • confusion
  • unconsciousness ("diabetic coma")
  • DKA


11 comments:

kjdeweese said...

Love you dearly. It is hard and it is everyday and you never ever ever get to rest. Have you considered looking into getting your own CDE degree or maybe going to Joslin or the Mayo for classes. The more educated you are the less they can fart around with you.

Meri said...

Laura, my heart aches for you! Before we were sent to the right place, we had to deal with endos and nutritionists that only had delt with adult diabetics. Babies can not be treated as adults, or even children. You need someone who knows.

I can't imagine that CDE saying that to you! That you shouldn't have listened to the last one! OMG!!!!

You need to find someone who knows Nate's name. I know his name. I love him. If I had the answers I would be there for you night and day, because I know how hard it is to control a babies blood sugar. A good pediatric endo should know. A good pediatric CDE should know.

{{{{HUGS}}}}
If I can help in any way...Please email me, or call anytime!

Amy said...

(((HUGS))) Laura!!! I'm so sorry your dealing will ALL OF THIS CRAP!

I told Joanne once that I LOVED Texas Children's in Houston.....they were absolutely amazing and I HATED leaving them....but they got us on our feet- we had amazing support from them. Our endo in Tulsa....not so much...been much happier with our pediatrician here in Alaska. I know Houston is a drive...but it's a thought....I still wish we hadn't switched when we moved to Tulsa. They would have been worth the 8 hour trip for us.

Hang in there....YOU ARE AMAZING! Take care of yourself...get rest....as much as you can! Love you girl!

Lora said...

I am sorry Laura. You will learn and it will get easier. Maybe you could find one CDE you like and specifically ask for her and hopefully build a relationship?? Just an idea.

Remember... You are an amazing mom and you can do this.

Penny said...

Laura,
I found your blog through another blog I read. Isn't that the way all good blogs are found? :0)

I am mom to Grace, Type 1, age 7, diagnosed one year ago January.

I am so sorry about what you are going through with Nathan. He sure is a cutie! What if you told your endo's and your CDEs what you said here in this post? They might get it then, about pairing down your team to one CDE and one endo who can focus on Nathan and helping you and your family. It must be hard, my thoughts go out to you.

Glad I found your blog. Know that other Type 1 Moms understand and can support you.

Penny
asweetgrace.blogspot.com

Wendy said...

LAURA!!!!!

You've had such a hard couple weeks...(((HUGS)))

I'm so sorry you're dealing this all of this. Addy was slightly older than Nate when she was dx...I remember all too clearly those hazy days of trying to manage such a little person.

There were days I didn't think she'd survive.

And days that I didn't think I'd survive.

Somewhere around our 6 month mark, I figured out that we were just a number too...that the endo office (who saw both adults and peds) had kids with newer dx to deal with. I remember feeling like we should have been special enough to get a phone call back or help when we asked for it...but...we were just a medical record number.

I remember feeling so alone. Where do I go from here? How do I make changes on my own? I was so scared.

I know T1 is on the rise...and I would NEVER want other families to go without the special care we rec'd in those first few weeks. I know they're busy...but...it was a very lonely time.

Just know that you are heard. Nate is loved in our community and we will do anything possible to support you.

Feel better, strong Mama. Feel better soon...

phonelady said...

Oh my gosh Laura I am so sorry you are finding all this crap so hard and yes it is very hard , my son was dxed at 6 and yes he is a child and yes he needs to be treated as such . I m sorry you dont like the cdes . Perhaps you can find one on your own like Lora said and build from there , I know what it is like to have to deal with stuff you really dont want too . Take care and stay strong my dear .

Tracy said...

I am TOTALLY with you! Zane was only 18 months at dx and our CDE's seemed to have NO CLUE! I remember them telling me he needed to eat at least 100 or more carbs per day. I had to make sure they realized that he was 18 MONTHS not 18 YEARS. They just don't get it.

I know how hard it is with a baby with D. Never knowing if they are high, low, or just acting their age. This is why we tested as often as we did, up to 15 times per day.

I am sorry you are not getting the support you NEED from your Endo's office. I will repeat what I have seen others write, you are LOVED here. You are a GREAT mom. And WE know you do the best you can for Nate!

((((HUGS))))

2 Green Eyed Girls said...

I know you are frustrated, and rightfully so, I have been there many times, especially where Chidlren's is concerned. Please know that you are not alone - just say the word and I'll give you a call. Sometimes hearing someone else's approach to these crazy blood sugars can help or spark something else. I'm always up for a good brainstorming session. Hugs to you and that sweet sweet boy!

Wendy said...

You can do it. Nathan can do it. You both can do it. You will find someone that knows his name and treats him like the sweet little baby he his. If it helps WE ALL know his name and WE ALL will be where whenever you need us! It will get better. I promise. xoxo

Penny said...

Great post. (Was referred here by Meri due to your recent surgery which is similar to one I'll be having soon.) You son is beautiful! I'm so sorry to hear of his diagnosis. My son, Riley, was diagnosed 4 1/2 years ago when he was 3. It's a very tough road. Hang in there.