Cardiology appointment

Nearly a year after completing the Fontan, Namine’s doctor cut back her medication as a response to her healthy heart.

We had a long day ahead of us, and none of us felt well. Therapy can be rescheduled, but not so with an appointment to see Namine’s cardiologist.

Pre-appointment bloodwork

Before the cardiology appointment, Namine had to have bloodwork done. Needles are far from her favorite thing, but they no longer hold the fear they once did. When they called her back (butchering her name as they usually do), she asked that only I accompany her. As she followed the lab tech back, she exclaimed, “I’m so excited!”

The tech looked at me quizzically. “She does know she’s getting a blood draw, right?”

Namine didn’t give me a chance to answer. “Of course I do!” She sounded a little insulted; she was right there, after all. Why wouldn’t the tech talk directly to her? “And I’m excited to do my blood draw!”

The tech shook her head, probably thinking What a weird kid.

As we got situated in the room, Namine was talking a mile a minute. As the tech got her vials, tubes, and needles ready, Namine laid her arm out for her. This gave the tech pause once again; this small child was offering her arm up willingly? Unheard of, but she wasn’t going to question it.

Meanwhile, Namine was talking a mile a minute. She informed the tech of her favorite color today (it’s orange, by the way, but it was yellow yesterday), she told her about school and how “my mommy teaches me now because the kids at my old school were mean but they’re my friends anyway” (talk about a heart of gold <3), and she told her all about how she can walk in her walker and climb into the car all by herself. She told her more besides, but even my memory has limits.

While Namine was talking, the tech sat down, needle in hand, and was about to stick Namine, who paused mid-stream and yelled “Wait!” The tech looked at me expectantly. Here was the fear. All of the talking, all that bravado, it was a mask — it had to be. Now, in the face of the needle, would come the fear and hesitation.

But Namine surprised her again. “You can’t do it until I tell you to. I will count to three, and then you can do my blood draw. Okay?”

“Oh… okay.”

“Okay. One, two, three,” Namine counted rapidly. “Go!” The tech complied, and as she drained blood from Namine’s arm to fill two vials, Namine continued her previous monologue, as though nothing had interrupted her at all. When it was done, Namine bid her loud and happy farewells — and not only to the tech, but also to anyone within earshot and eyesight.

Her strong heart

As for the appointment itself? It could not have gone better. Namine’s heart is healthy and strong, and her cardiologist fully expects Namine to continue to be a fully active child — as though she isn’t already. Her heart is oxygenating her blood nicely, keeping her blood O2 at a nice 96 percent even in the midst of dealing with her boogery sickness.

Even though Namine’s Fontan was a modified fenestrated version of the surgery (which basically means they left a hole to relieve blood pressure within the heart), there is no evidence that the fenestration still exists. Her heart has closed the hole on its own, which eliminates the need for a further surgery to manually close it.

Furthermore, they are cutting back on the diuretic Namine’s been on. One thing (among many) the doctors were concerned about, post-Fontan, was edema. Namine still needs to be on it, but her dosage has been cut in half. I asked Namine if she was excited that she has to take one less medication — up until today, she was taking half a pill in the morning and half a pill in the evening — but she responded unenthusiastically, “It doesn’t matter to me.”

After I thought about it for a bit, her response doesn’t surprise me a bit. She’s used to taking medications; she understands, as well as a five year old can, why they are important, but at the end of the day, they are simply her responsibility. One less or one more, it doesn’t matter a bit to her — she will do what she must.

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