Tuesday, September 30, 2014

Maybe Slow and Steady Will Win the Race?

Yesterday was our six-month appointment with cardiology.  It went relatively well.  I think my head may have been in the clouds, but I was hoping there might have been some improvement in his heart function.  There's wasn't.

But on the other hand, it wasn't any worse.  So he's considered "relatively stable."  Which means that yes, it's still an issue, a pretty big one.  Still can (and probably is) causing further damage, but it's not progressing quickly.  His heart is still big (gotta be to hold all that love, right?) but doesn't appear bigger than before.

The long and short of it is, it's probably not going to get better unless he can get off the ventilator, and we just don't see that happening yet.

We didn't make it to his pediatrician because cardio was running pretty far behind.  So we'll see him on Friday, but really, that's pretty basic.  They need to measure and weigh him and feel his thyroid.  We've got his latest labs in and they look good.  Not expecting any issues there.

I did spend some time on the phone yesterday with his pharmacist.  We're going to move his newest asthma med, the one we think is giving his tummy trouble, to his last main feeding at night.  Right now, he gets it on a fairly empty stomach during the night.  The hope is that by giving it with food, and right before bed, he'll tolerate it better and sleep through most of the yucky part, kinda the way I dealt with the lovely pre-natal vitamins that made me feel lousy.  By the time we see Dr. K on Friday, we should have a good idea of whether that's working or not.  Really hoping it is.  I do love it when we finally come up with simple fixes.

So here's my hope and prayer, and if you could include it in yours, too, I'd be grateful.  Aaron's lungs need to be stronger, and he needs to start being able to wean off his ventilator, at least part time.  We'll be working even more on his stander and other therapies to continue strengthening his little body.  It's going to be a long-term project to get him off of it.

Usually vent weans don't happen during the winter.  But in talking with his doctors, we think part of his asthma may be related to environmental pollens and allergies.  If so, it actually should be a little easier in the winter, when all the pollens are frozen.

So once we get the tummy trouble under control, we may be trying again.  We've been down this road before.  Even made it far enough a couple times that I came up with a complete weaning schedule and calendar.  Unfortunately, I've not been able to get Aaron to agree and sign off on it.  Maybe the third time's the charm??

  There is no telling how many miles you will have to run while chasing a dream. ~Author Unknown

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