So I'm not sure what to do...we have cancelled all our 'non-essential' appointments for this winter, except for an upcoming cardiology appointment. I have been on the fence about this one, because we already have a cardiac baseline for Dakin, and save for a little tachycardia, he's fine. This all came about because a little SMARD friend of ours went into unexplained cardiac arrest--I nervously called up the neurologist, who assured me that that type of this is not at all normal for SMARD, but she wanted a cardiac baseline anyway.
I told them he had already had every cardiac test under the sun, but they went ahead with the recommendation anyhow...Gah. I don't know what to do. Do I risk taking him to the appointment or risk them not having a cardiac baseline? At this point, since Dakin's tachycardia is extremely well controlled on Atenolol, I am thinking he's ok to put this off for a while, but I just don't know.
Anyway. I called the neurology nurse to ask what to do. What would you do? I asked the cardiac people about coming right in and not having to wait in the waiting room, and they told me all they could guarantee for a vent kid was less than 10 minutes. Seriously? I hate to act like queen of the planet, but when your child's life literally depends on keeping him away from sickness, you have to be demanding.