What a week!

I can't even believe what a shitty week this has been.

It started last weekend with so much work that there was no time for much of anything except more work! DQ was so bad too. she was misbehaving non-stop. MS and I were both at our wits end. Seriously, DQ spent more time on her room thinking about her behavior than anything else.  Do you know how hard it is to get through to a child in pain that she can't treat everyone around her badly because she is in so much pain?!?! It took hurculean will to deal with her and we still lost.

Monday came and DQ had an appointment with a neurologist in hopes of finding relief from abdominal migraines. The problem was that DQ got a migraine, complete with many rounds of vomiting as we tried to leave. We were late and then DQ vomited many more times in the reception waiting room.

Two hours later, we left the doc with more meds and a lot more questions, including the possibility that DQ's debilitating migraines may have been brought on by sildenafil. I raised this idea years ago , but was told "no, sildenafil doesn't cause stomach ache." After talking to the neurologist and researching on my own Monday and Tuesday, I decided on my own that  it is likely sildenafil has caused this excrutiating pain for the last 2 years!

And the guilt hit. If I had researched more two years ago,  could I have ended her pain earlier?

While I had my epiphany, DQ was still in mountains of pain and thus behaved horribly. At therapy Monday night, MS and I discussed how her behavior was hurting us. It was raw and painful, but we came to some decisions as we drove home to better address her pain and keep us sane.

We got to try it out as soon as we walked in the door as DQ was fighting with my mom.

Tuesday morning, DQ fought more.  I got her to school, but it was not easy. And at 11:00 am, school called because DQ had a nosebleed that led to a migraine. DQ asked to take a nap then and did so until MS could get there. DQ had missed so many days of school already because of pain, then this. My head couldn't help but think we'd have to pull her from school if no answer was found to the migraines.

By 1:00pm, MS was there to take DQ to the dentist (a horrific experience on the best of days). Then the dentist tells DQ she must give up her pacifier because her teeth are showing signs of its use.

Needless to say, DQ did not take the thought of losing her only comfort item in this cruel world very well. Neither did I. I sat there, thinking of my sweet little girl, in so much pain (that may have been caused by medicine I gave her), and we were supposed to take away her only comfort item--her only tool to make it through needle pokes, migraines, and nightmares! I was angry and sad.

Thankfully, after crying quite a bit, our PCP said the dentist was crazy and DQ got to keep her pacifier. Her comfort was and is more important than orthodontia she is not likely to ever get!

Drained from all of that, we had a snow day. I was staying with the kids trying to work,  when I realized I typed a deadline wrong.  I had a brief due on the snow day and not the next day.  I had to draft it all and file it while addressing the needs of the kids!  WTF! I never make those errors,  but I did with that day!

Thankfully,  MS came home early to help. Just as I hunkered down to finish, the cardiologist called. I was calm during the call. I took it in stride. But as you already know, it broke me.  I mean how screwed up is it to get a phone call that made me hope I was giving my daughter toxic levels of digoxin. SERIOUSLY, HOW SCREWED UP IS MY LIFE TO HOPE MY DAUGHTER HAS TOXICITY!!!

After migraines, sildenafil, loss of pacifiers, fighting, emotional trauma, and work deadlines making life hell, I certainly didn't need toxicity or the worse alternative in my life. Our lives. I'm ready for some good news if only the universe would conspire for good and not evil.

The Pacifier

Picture this . . . Thanksgiving 2011. Lunch for the kids has just ended and a very tired Dancing Queen begs to take her nap. Then it hits us: we forgot a pacifier!

All hell broke loose.  DQ was inconsolable, screaming, crying, full-fledged melt down/tantrum.

Could this be a teaching moment? Would we end the addiction? We weren't about to give in to a child screaming at us.

I chose to do the only logical thing--left the Mad Scientist with DQ and made a mad dash to the closest drug store

And as my husband smashed his head against the wall calmed DQ down and determined if she had repented enough to earn a pacifier, I was lost, trying to determine which pacifier would be best for my tired girl.

I got in line behind a grandpa. We chatted as we waited for the clerk to ring up lotto tickets down the way. After 5 minutes of no movement, I asked the clerk whether we were in the correct line. The grandpa offered for me to go ahead since I was trying to alleviate my daughter.

As we continued to wait some more, the grandpa regaled the story of his young grandson and how he was so old when he finally gave up the pacifier. Then, he went where all well-meaning people go. He told me how there just gets to be a point when a child cannot have a pacifier any longer.

Then he asked how old my daughter was. I told him 3.5.

His demeanor immediately changed. He scolded "Well, you have to get her off of it. Put a piece of spice paper on it one time and she'll never go back. You've got to break her of it."

I explained that my daughter is sick and the only thing that calms her down in the hospital or at blood draws is the pacifier.

He pushed on, set in his way, and I let him.  The fight wasn't worth it and I had just paid for the pacifier.

I'm okay with it. I'm okay that he felt compelled to force his opinions on me. (Heck, I used to be that person who'd frown upon seeing a child who could walk with a binky in their mouth.)  I know people have strong opinions about it.  And I'm okay with those opinions not comporting with me reality.

I'm also very much okay with the fact that my daughter still uses a pacifier at 3.5. I saw why the day of her cath. She was in pain, in a strange place, with strangers all around her. She needed one thing that was a comfort and normal. Her pacifier is that for her. Yes, she has "pets" that she sleeps with at night,  stuffed Lightening McQueen and Elmo, but those she can sleep without. The pacifier is the calm.

DQ in the hospital waiting.

When DQ has an echocardiogram done, she is extremely well-behaved. We've been told over and over again that DQ is one of the best behaved kids they have during those exams. The only reason is because she knows she gets her pacifier.

The fact is, I want her to have something that makes her happy so that when she is being hurt by strangers, she can concentrate on her happy place. Her happy place just happens to be sucking on plastic.

My 3.5 year old has had her ribs spread apart and chest opened three times, her heart has been sliced and diced twice, she has had seven heart catheterizations, three of which had "complications", she had another surgery to correct a defect unrelated to her heart, and lots and lots of procedures under anesthesia with a breathing tube.  My sweet little preschooler usually has her blood drawn at least once a month. She has been averaging two shots every two weeks. She gets x-rays monthly, echocardiograms every four months, abdominal ultrasounds every four months, hospital stays frequently, and IVs often. She wears a nasal cannula, taped to her face, pumping oxygen in her nose every night, she takes 10 medications a day on average, and she doesn't really complain about any of it. The only thing she asks for is a pacifier to suck on when times get hard.  I don't think its too much to ask.

Besides, no matter how much she loves the pacifier, she's not going to go off to college sucking on one at night!

DQ leaving the hospital, after multiple blood draws, echo,  xrays, and lots of doctors.