Saturday, February 4, 2012

A Glimpse

Below are some to the questions and things I hear in a typical week from the Dancing Queen. A sorta glimpse into what it means to have an almost 4 year old with complex heart and lung disease and 22q11.2 deletion syndrome.

Mommy, we can't walk to the candy store. The cold air makes me cough and my chest hurts.
Translation: Between the high pulmonary pressures and asthma, when the Dancing Queen is out in the cold for more than a couple of minutes, her lungs can't handle it.

Mommy, can I see videos of myself as a baby in the hospital?
DQ always wants to look at videos and pictures of herself as a baby, in the hospital.  She always points out when she sees baby DQ with a pacifier. This is one of the hardest things she asks the Mad Scientist and I to do. The pictures are painful reminders.

Mommy, I get my army, it's just one little poke. It doesn't hurt a lot, only a little bit.
 Translation: Her weekly Hizentra infusions that are done via subQ button (small needle that only goes into the skin). DQ gets donated human immunoglobulin once a week in her belly or leg. The needle stays in for 2 to 2.5 hours, but it only takes one poke.While DQ says it doesn't hurt a lot, when it comes time to give the "one little poke" she fights us.

Mommy, Daddy always says "a double shot of enalapril."
Mommy, I need my lasix to help me pee. I need my aspirin to help my heart.
Translation: DQ takes about 10 medications a day. At breakfast every morning as I give DQ her morning meds, she tells me these things.  My husband always uses two 1mL syringes to give enalapril and I use one 6 mL syringe; hence double shot of enalapril.

Mommy, I need to eat, sleep, play, and take my medicines so I can grow big, big, big.
 For some reason, this is DQ's normal topic of conversation on the way to dropping TRex off at latchkey in the morning.

Mommy, I'm little because I don't eat. If I eat, I'll be big like TRex.
Translation: DQ rarely eats as much as she should. It is a constant struggle and quite the opposite of her brother.

Mommy, Mickey is sick. I'm taking him to the hospital. His sats are 35. He is almost dead. He'll be better in a week. 
 Translation:  DQ and TRex playing with their animals. Mickey Mouse was sick. It doesn't matter the character, but someone is always sick, they always go to the hospital, they always get shots or surgery.

Mommy, my army kills the bugs, but I still have to take yucky medicine. That's not like my yummy medicines. 
Translation: Yucky medicine=antibiotics; yummy medicines=enalapril, lasix, aspirin, calcium carbonate, calcitriol, and prevacid.

Mommy, why do I have heart disease?
 When we wore red for heart disease, DQ wanted to know why she had heart disease. I had to explain that she is missing a piece of chromosome, so her body didn't know how to build her heart properly. That wasn't a satisfactory answer, so she asked me over and over and over again. Finally, I told her I don't know. She wasn't happy with that, but accepted it.


  1. Heartbreaking words coming from your precious girl. I hope someday she'll have all the answers and none of the illnesses. In the meantime, she has such a positive outlook for a tiny girl who has known pokes, medications, surgeries and hospitalizations for her entire life.

    Best (in all respects),

  2. you're a great mom. I don't hear anything but a normal little girl in her questions and comments. Obviously, these are not normal things, but she's trying to figure out the world just like every other little girl her age. she is just too sweet.


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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