Sunday, June 30, 2013


"Mommy, I hate oxygen! Why do I have to wear it?

Your heart is sick and needs rest.

"Do other kids have to wear oxygen and get armies [Hizentra infusions]?"

Yes, honey, they do.

"Really?  I'm not the only kid who has to wear oxygen and get an army."

No, honey.  Other kids wear oxygen and get armies.

"Other kids are like me?"

Honey, I'm not sure there are any kids exactly like you, but other kids need to get armies and wear oxygen.

"Why do other kids need oxygen and armies?"

Other kids have DiGeorge's Syndrome and need armies.

"Like me?!?"

Yes. And other kids have pulmonary hypertension and need to wear oxygen.

"Like me?!?"

Yes.  Some kids with pulmonary hypertension also have to get poked like you, but they don't only get it once a week, they have to wear it all of them.

"Not only on Sunday?"

Nope, not only on Sunday.

"Why, Mommy?"

Their pulmonary hypertension is different that your's DQ, so their doctors gave them different medicine.

"How does an army help the lungs?"

No, sweety.  The other kids don't get armies with the needles, they get other types of medicines that help open up the vessels in their lungs.

"Why do I have different medicines?"

You are different.  

"Am I the only kid in my family who has to wear oxygen and get an army?"

Yes, honey, you are.

"But, why?"

Remember, you were born missing a piece of your map.

"What map?"

We all have maps called chromosomes that taught our bodies how to be built, like directions.  When the egg and sperm came together to make you, you had a map, but it was missing a small piece, so your body didn't know how to put everything together. Without that small piece of map, you were born missing parts of your heart and lungs and other things.

"Why was I missing a piece of my map?"

I don't know, honey.  I don't know.

"But, why is my heart sick?"

Even though you've had lots of surgery, your heart is still broken.  You are still missing half of your lungs, so it is very hard for your body to keep oxygen in it.

"Why does your body need oxygen?"

If oxygen doesn't go to parts of your body . . .

"It dies."

Yes.  If you don't get oxygen to your brain, it will die.  If you don't get oxygen to your fingers, they will get very blue and eventually die.

"Why do they get blue, Mommy?"

When blood doesn't have oxygen, it is blue.  That is why Daddy and I worry when you start to turn blue on us.

The Dancing Queen remains quiet for a stretch, very contemplative and sad, then asks "Why do you and Daddy worry about me, Mommy? When I turn blue, will I die?"

Yes, honey.  We worry when you are blue or swollen because your heart is working too hard and we don't want you to die.  But most of the time, when you are blue, you're not sick enough to die.  And right now, you're really pink!

"What does it mean that I'm pink, Mommy?"

When you're pink, you have lots of oxygen.

"Mommy, you should have put my oxygen on my earlier today when I watched the Lorax."

I didn't know you needed it, DQ.

"Mommy, don't kid.  You always take care of me and know when I need something."

I'm sorry. I'll make sure to put your oxygen on you more often.

"I love you, Mommy."

I love you, DQ. I love you.

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Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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