Friday, January 6, 2012

I am a bad mother of a kid with a heart defect

This morning I checked my calendar to confirm plans for Wren's cardiology clinic this month.  I thought it was on the 24th of January but I couldn't find it in the calendar.

It has been a whole year since the last checkup.  At Wren's last appointment we saw that his gradient (measuring the level of constriction) at his aortic valve was relatively stable, or if worsening doing so at a rate that was statistically insignificant when measured at 4 month intervals.

"Lets see if we can go a year between appointments" said the cardiologist.  "If you can handle that, it will give us a larger interval to measure any changes."

I said I could handle it because, with Wren being asymptomatic (as long as you don't listen with a stethoscope) its like having a totally healthy, gonna-live-forever, might-be-a-professional-soccer-player (not a golfer), can-go-on-a-roller-coaster kind of kid.  Its only in the awful wait for the results of the echocardiogram - that 20 minute wait in a bleached exam room with nothing to do but worry, you can still smell the gel and you feel like hacking the hospital computer terminal so you can just surf the web for pictures of Hawaii - only in those minutes do you have a "child with a CHD."

After that appointment last January, I called the Heart Center Scheduler and they said that since it was a year out, the calendar was not yet open and to call back.  I called back a month later and it was still not open, they said to call back.

But I forgot!

It turns out that Wren is due for his next cardiac clinic but he has no appointment!  The Jan 24th Date I was looking at was from last year!

So, I called today and the earliest available is March.  I have said that March is fine but asked them to check with the cardiologist to confirm that it will be okay to go 15 months between appointments.

Then I asked "So, if I totally forgot and never called again, would someone call me up and say "Hey, you have a kid with a heart defect who needs treatment?"

There was a pause.

Then [names changed] Susan who used to be Lance who used to be Jeremiah who used to be Sarah said "Well, we'd like to say "yes" but really, we have had cut-backs and there has been a lot of change-over and so, we might not be at that point yet."

So, really, heart parents.  It is as we suspected - we are in charge however inadequate we may be!

I am mildly concerned but since Wren is asymptomatic (except on the inside) we hope to enjoy three extra months before the longest 20 minutes in the world in the sterile room.  And I hope that the news then, is still good... or gooder.

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