Every month….or when the time is right. — 5 Minutes for Special Needs

Every month….or when the time is right.

by Tammy and Parker



                               

Each month it goes something like this:

Hmmm….I need to get Parker’s montly bloodwork drawn.

All one zillion and one bottles pulled for the zillion and two different tests.

The liver function panel.

The Thyroid.

The CBC

The tests to see if the statin Parker is on is breaking down his muscle mass.

But the one the strikes terror in this Mama’s heart is the BNP. (B-type-Natriuretic Peptide) This lets us know if Parker’s heart is working harder than it should be.

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Anything under 100 is considered normal. (Parker’s BNP was once in the 1300′s ! )

But I don’t want normal. I want “Hot Damn!” The BNP came back looking GREAT and now I can be happy the rest of the month.

Yeah. You read that right.

One blood test can set the tone for my whole month. What can I say? We all have our weird and this is some of mine. I have yet to learn how to not freak out….uh….worry a bit.

This is such an issue with me that I have been known to go to rather OCD levels to make sure we achieve the most opportune blood draw experience possible.

Because being just a tad bit sick can throw off BNP results.

Or if Parker is crying during the actual blood draw, that too can muck up the final numbers.

We just got back from Parker’s latest blood draw about 30 minutes ago. I really should have had this done last week, but Parker’s sleeping heart rate was higher than it should have been (most likely due to the constant aspirating he’s doing with his saliva) and so I waited until today.

Today, I thought, the time is right.

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When I saw who was on duty at the lab, I almost turned around and came home. We have certain ‘lucky’ lab techs that hit the motherlode the first stick. Parker trusts these two techs. We’ve never had today’s tech and I wasn’t sure if I should take the chance…..or just come back another day.

So here I sit. Waiting for the cardiologist to call back with the results. It will mostly likely be tomorrow or the next day before he calls.

Which gives me lots of time to assume the worst.

Yup. Just call me Dame Doom.

To help me bide this time, and take my mind off things, how about sharing with me things YOU dread having to deal with when it comes to your kid with special needs.

And how do you deal with it?

Update: Dr. Heart just called. Parker’s BNP just came back at 18. EIGHTEEN! woot! That is excellent.

Dr. Heart gave me all of 20 seconds to rejoice before mentioning that he’d really like to get Parker back in the cath lab soon.

Crap. Heart caths require lots and lots of Valium.

For me.

Well, I guess 20 seconds of Happy Dancing is better than none at all. I’ll take it!

Tammy and Parker can also be found hanging out at their other blog, Praying for Parker where they dish about what’s it’s like to raise a special needs kid in a typical world. They also spend time on Twitter where they are known as @ParkerMama.

Email Author    |    Website About Tammy and Parker

I am the mother of 5 wonderful kids. My youngest, Parker, is a medically fragile blessing with Down's Syndrome. I am @ParkerMama on Twitter.

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1 mindy July 27, 2010 at 4:43 am

I hear ya. We all live and breathe by a blood test result here too (Plasma ammonia) and it is so funny how an increase of ten points can ruin and entire day and linger until the next appointment.

I pray that you get the number that you need to hear ASAP!

Mindy

2 Heather July 27, 2010 at 8:09 am

I dread:
swallow studies (he never passes!)
the neurologist (Dr. Gloom and Doom)
chest x-rays (usually pneumonia)
and the pulmonologist (she just never has anything nice to say)

Praying that you get the best numbers yet!

3 Astacia July 27, 2010 at 4:31 pm

I am neurotic about blood work, too. Bear has horrible white coat syndrome as it is. Needles freak her out so much it make my ears bleed. I always demand to have a “below the belt” approval for her pokes. She’s so skinny, it’s hard to get a good stick. Add in screaming and adrenaline and those little veins disappear. We have the best luck at her ankles.

I am so glad his numbers came back so low, that’s amazing!

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