Bronchoscopy, CT Scan, and Biopsies, Oh My!

Tomorrow we head to Portland for the next stage of figuring out what’s happening in my poor little Calf #6’s lungs. There she will see another pulmonary doctor for a second opinion. The Anchorage one is scratching his head with my daughter! In January we found evidence that her lungs bled (again, aside from the one that happened when she was just a few hours old.) Recent testing has shown no cause. That testing has included bloodwork, a CT scan, and *shudder* a lung biopsy. (She had a liver biopsy at the same time because of some ongoing liver concerns.) And she’s not been anemic, which is usually the case when a kid’s lungs bleed.

She’s a mystery, my baby.

Blood testing ain’t been fun (last month’s was horrific–took over an HOUR and SIX pokes!) but the worst has been March’s biopsy. She got herself a one-night stay at the hospital for recovery. Aside from being in pain, there were WAY too many times when someone (nurse, x-ray tech) would come and ask, for example, “Can I take your blood pressure?” She invariable replied, “No.” And the person would invariably ignore her and do it anyway. I. Was. Furious. Don’t ask her if it’s not optional!!

So I was not at all surprised when tantrums like crazy started after that. These are not our typical 2 year old tantrums. These are long (15 minutes) and she’s kicking and screaming and flailing and banging her head and having a very, very, very bad time of it. Worse, they are REALLY hard to stop. Pre-biopsy, sure she had times where she got upset for some reason. These? These are hellacious and MUCH worse.

I’ve come to realize that they are happening when she doesn’t feel that I’m listening, truly listening to her. *Sigh* That’s hard to do with four other little ones needing my attention. (And then there’s time for me. . . somehow. . . oh and I’m married, I guess I should spend time with Daddy too?)

Anyway. I’ve learned I can stop these tantrums early by being calm and gentle, giving her extra attention, apologizing for not listening, and asking her to repeat herself. (Except, I’m not a calm, gentle kinda mom. I’d love to be, but after all these years I think I just need to accept that it’s not my style.)

She’s a very verbal little person and fairly easy to understand so having her repeat herself isn’t too hard. Sometimes I can’t give her what she wants–and you know, she’s usually and amazingly OK with it.

Anyway, tonight I decided to give Calf #6 a bath and a massage. A lovely, nice way to connect with this precious little one and give her body some good, calm, pleasant attention. We’ll be leaving ridiculously early Wednesday for the appointment so I wanted to get to bed early. Unfortunately, we got started with the bath a little late. I forced myself to go slowly with the bath, though.

While washing her hair I told her we’d be going on an airplane in a few days, and how fun would that be? She made the sign for “plane” with her hand (we did baby sign when she was younger) and flew it around the tub in front of her. I think I then told her that we’d be going to see a doctor.

Then she shocked me. “Hurt Nahnoo,” she said, pointing to her biopsy scars on the right side of her belly and using the name she calls herself. “Hurt dogter offis.” After I picked my mouth up off the floor, I agreed with her. “Yes, we went to the doctor’s office and you were hurt there.” I asked her if she knew why they hurt her at the doctor’s office; when she said no I explained that we need to find out why she’s been sick.

She then talked about the Tigger bathtub toy. “Tiger hurt belly.” I looked. My jaw dropped again. Sure enough, on the right (and left) side of his belly was a pair of parallel stripes. . .scars, in the eyes of my 2 year old medically special needs daughter.

P05-04-15_23-32[2]

I was amazed at her insight, how smart she is. “Yes,” I agreed, “Tiger did get hurt. Just like Nahnoo.”

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