Healthy Superkid Update

I have not found much time for blogging this last week, and I’m afraid that’s going to be the case until sometime next week.  I somehow think I’m going to have all this extra time when school starts, but I think the reality is that I spend the morning recovering from getting everyone out the door, and the afternoon gearing up for everyone coming back through the door.  Once they arrive, then the action and noise involved makes up tenfold for what wasn’t there during the day.  School totally wears Hunter the Dog and I out, I’ll tell you that much.

Anywho, it’s late, and I’ve got lots to do tomorrow, so this has to be quick.  I just wanted to share the good news that Superkid’s cardiology appointment last week went really, really well.  It was her first cardiology visit in over a year, and her heart looked so good that they told us not to come back again for another year!  That, my friends, is quite a record for us.

We also saw an otolaryngologist (ear, nose, throat) at the children’s hospital, this week.  I wanted to have Superkid’s nose checked, since she’s having 3-4 nosebleeds a week now, no matter what her clotting levels are.  That appointment wasn’t quite so bright and shiny.  It’s no big deal, really, but Superkid has a small artery that is a little too close to the surface of one nostril.  Normally, they could cauterize that artery in a quick outpatient procedure.  Unfortunately for us, it’s not a procedure the ENT wants to do while Superkid is on coumadin.  In other words, she’d have to check in the hospital for a few days before to get onto a more surgically appropriate, I.V. administered blood thinner, then spend a few more days after the procedure getting back on to a therapeutic dose of coumadin.

Which makes a small-time surgery a big-time hospital stay.  Last time Superkid had a minor procedure, it took longer to regulate her blood thinners than it did after her last heart surgery.  Which meant an “outpatient” procedure kept her in the hospital for TWO WEEKS.  On a heart monitor and in isolation the entire time.  (Isolation because Superkid tests positive for MRSA.)

So, obviously, it’s like being between a rock and a hard place.  We can either continue to put up with the inconvenience of frequent, sometimes prolonged nosebleeds, or we can risk a long hospital stay for a procedure that may or may not prevent those nosebleeds.  We’re waiting to hear back from the cardiology team, but I don’t think it’s likely that we’ll opt for cauterization unless the nosebleeds get much worse.

The good news?  I made sure the ENT took a good look at Superkid’s tonsils, and he reassured me that they are just fine.  That’s all we need with this child, is a tonsillectomy–the stuff of nightmares!  So, I was quite happy about that.

Back to cardiology, I’m not sure how to explain what a wonderful surprise it was to hear that Superkid’s heart function is excellent.  It has been three years since her last valve replacement, and Superkid has grown A LOT since then, so I went to this appointment knowing that there was a chance they would find signs that her heart was outgrowing the artificial valve.  So it was a wonderful relief to find out that they continue to work well together.

And I’m not kidding about how much this girl has grown.  Here is proof:

Superkid, Fall of 2007

Superkid, age 7, CHD survivor living with mitochondrial disease and doing great.Superkid, End of Summer 2011

Miracles continue to happen.

Comments

  1. Lynne' Huber says:

    Thank you Ruth, for reminding me of continually unfolding miracles. The difference in the pictures of Sariah are amazing! I am sorry to hear that the nose bleed procedure would be so hard. That is another reminder that Sariah’s life is always a delicate balance. I love you and appreciate all you share with me in your blog. Lynne’

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