I took the day off today, though, to help Jessica and Namine through a day of appointments, so I had the opportunity to watch Namine walk on the treadmill. Not only did she impress me, but she did the best she’s ever done – and Jessica can attest that I am not exaggerating.
Namine walked in therapy today for a total of twenty minutes and three seconds (but who’s counting, right?), at two and a half stretches with rest intervals of thirty seconds in between. Namine’s endurance simply amazes me. I could plainly see that she was in pain, but she pushed through. Only during the last couple of two and a half minute pushes did she cry – or, in the last sixty seconds of her twenty minutes, yell at her therapist – but even then, she didn’t stop or drag her feet.
After she was done, her therapist Leslie asked her if she wanted to rest in her walker straps or get back on the exercise table. “I want to get on the table.”
“Okay,” Leslie said. “Then I need you to stand up so I can unstrap you.”
Without hesitation, Namine immediately stood up.
Now, think about this for a moment. Namine had just been through twenty minutes of hard, physical labor. She was drenched in sweat – hair sticking to her face, back of her shirt just soaked. And like it was nothing at all, she stood up again. Leslie told me shortly after that this (among more evidence) was a clear indication that despite Namine’s protests, she has come nowhere near her physical limit. It is for this reason that she pushes her so hard, and it is a good reason. Namine wants to walk, make no mistake; but she will slack – anyone would – if given the chance. But it’s not her job to push herself. She’s only five. That’s what her therapist is there for.
Therapy was far from the only appointment, of course. Next up – after lunch with my mom and grandparents at a Chinese restaurant, which was a pleasant diversion – was cardiology. It was a standard check-up appointment. A weight check, an blood-oxygen check, a heart rate check, an EKG, and done. We’d be in and out pretty quickly, we thought. We were wrong.
Namine’s weight held no surprises. She’s been stable at fifty pounds since gaining back what she lost immediately after the Fontan heart surgery. No fluctuations, no failure to thrive.
Her blood-oxygen level is solid at 93-96. For Namine, this is a high indication that her fenestration has closed on its own. Since the fenestration’s purpose is to siphon off extra blood pressure around the heart for the first couple weeks to a month post-op, this is fine. The fact that Namine’s O2 level is holding steady is a fantastic thing.
Namine’s heart rate, however, was high – even as high as 145-150. Her normal heart rate is around 120, and there was no indication as to why her heart rate should be that high. Therapy had been done with for over two hours by this point, so that couldn’t be the reason. Namine’s cardiologist concluded that this was a simple matter of tachycardia – simply put, a heart rate that exceeds its normal range. The reason why she had tachycardia, on the other hand, is not so simple. The first step was to do an EKG, which had already been planned for this appointment anyway.
The EKG didn’t turn up anything unusual, other than the abnormally high heart rate. The cardiologist took the next step in prescribing a Holter monitor for 24 hours. A Holter is simply a device that allows a patient’s electrical activity (especially the heart, the best battery of them all). Namine has had to have a Holter for more than a mere 24 hours, so this was nothing daunting or new to us.
The Holter would have to wait until next week, though, due to equipment availability. Namine’s cardiologist opted to prescribe a new piece of equipment: the Zio patch. Its purpose was the same, just with less wires.
Since we were concerned with Namine’s high heart rate – and we didn’t want to wait a week just to get a monitor on her – we opted for the Zio patch. Namine was nervous about it, and she wasn’t any more thrilled about it even after the nurse explained that it was, as far as she was concerned, just a big sticker. “But,” Namine said, “how will you get it unsticky when it’s time to take it off?” (Smart kid, to think that far ahead.) The nurse explained that she was giving us some un-sticky-fying stuff. (I’m sure she used some real words, not made up ones. I just don’t remember what they were.) Namine was still wary, but at least she let the nurse put the thing on. It resembles a big band-aid that sits on her chest, directly over her heart. After the 24 hours are up and we remove it, all we have to do it drop it off in the mail. Couldn’t be easier. (Just don’t ask me if I trust the U.S. mail service, because that’s a whole different post.)
But even that ordeal wasn’t our last appointment, no sir. Last on the list was a blood draw. Namine has been bruising easily as of late, so we felt (and doctors agreed) that it was once again time to check her INR. Thus, the blood draw. But by now, this isn’t nearly as big a deal as you might think. When they called her name to take her back, she wanted to go by herself. Yeeeeah, that’s not going to happen. I said at least one of us had to come with, so Namine said, “Fiiine, you can come, Daddy.” The blood draw itself was uneventful. Namine held out her arm and told the tech what to do. The tech, for her part, was amazed at how Namine just shrugged it off like it was nothing at all.
Finally, our day of appointments was done. (The worst part about all this is that today was one of the calmer appointment days.) We went to the mall in celebration and got something at Build-A-Bear that my mom had put on hold for Namine: a new My Little Pony, one Fluttershy by name.
Before bedtime, we checked her heart rate twice. The first time was with our pulse oximeter, which read 112. We didn’t really trust that, though, because it’s had… um… issues… in the past. So I got out the ol’ stethoscope and timed a minute while Jessica listened to her heart. We did that twice, and both times got a heart rate of around 120. So yeah, I don’t know what’s going on. I just hope the Zio patch gives Namine’s cardiologist some actionable data.
It was one heck of a day. When I tucked Namine in for the night, I let her sleep with all her My Little Ponies.