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Sweet Relief...

Posted Sep 22 2008 4:36pm
Gabe's appointment with the fantabulous Dr. G went well. Not surprisingly the concerns I listed in my last post are mostly my own; the biggie is Gabe's stenosis from his patch procedure. And the verdict on the stenosis is that it is exactly the same - not getting any better, but not getting any worse. Since we have been down the stenosis road before, we ( intimately ) know how quickly it can go from "moderate" to surgery, so this is a good thing.

Dr. G did hope to see some improvement in the stenosis - meaning that the area would grow with Gabe - but seeing as the velocity of the blood flowing through the artery is measuring at the exact same rate as it did on his last echo, it looks like his wee artery is just maintaining the status quo. Of course, according to my most rudimentary ( embarrassingly so ) understanding, if the area wasn't growing with him at all, it would be worse and not the same, so I am going with it's growing a little.

It sounds like Dr. G. is preparing us for future intervention in that artery...again. We talked quite a bit about the cath lab and balloons, a future that will likely come to be realized before Gabe starts Kindergarten. The upside is that the likelihood of a successful balloon procedure is greatly increased from what it was when Gabe was an infant - at which time they couldn't even attempt the balloon because the risk of damaging the valve was greater than the potential benefit. Apparently this risk ratio changes drastically when a child outgrows infancy, so the risk of actually doing harm is significantly reduced. The downside is, as always, if the balloon didn't work we would, once again, be staring surgery in the face.

But back to the upside:

- Gabe's heart is functioning at 100%
- There are no other stenotic areas and scar tissue has not built up on his switch site or patch site
- Gabe's pulses are perfect
- His blood pressure, while elevated due to the screaming (the blood pressure machine is frowned upon in Gabe's world), was not a concern
- Gabe is up from the 5th % in weight at the time of his last OHS a year ago to the 20% today (25 lbs)
- Gabe is holding steady around the 60-65% for height (34")
- If Gabe didn't have stenosis from the patch, Dr. G. said he would be in perfect recovery.
- Gabe isn't on any medications
- Gabe shouldn't be considered to be medically fragile in any way whatsoever; we should treat him just like any other toddler in the world
- Gabe isn't under any restrictions
- And yes, I should just calm down

I did ask Dr. G. about the elusive yearly cardio checkups that so many of Gabe's post ASO peers have - as in will Gabe ever be able to move to a yearly appointment? Apparently the stenosis has quashed that in the bud ( damn stenosis ), and semi annual checkups to monitor the stenosis is on our dance ticket.

Did I add that the stenosis isn't bound by universal law to get worse. Currently it is still calssified as "mildish" not yet severe enough to be considered as moderate, but representing a larger flow obstruction than the mild category does. It is possible that it could just stay the same; in that case, we will just chill out and visit with Dr. G.

As for the rest of the visit - Gabe was a superstar. I was completely convinced that we would need a team of bruisers to hold Gabe down for the echo, but wowza, did that kid prove me wrong. He stood up on the scale for his weight and was measured against the wall like SUCH a big boy (I'm not sure he was as impressed as me). I am beginning to think that he actually listened to me when I told him he would have to lay down quietly and watch Sesame Street, because that is exactly what he did. He helped put the electrodes on and was entirely submissive. Either he finally used his listening ears or he is ( and rightly so ) intimidated into quiet behavior the sterility of medicine (helped with a hefty dose of memories of hospital beds)...though he wasn't actually scared until he finally saw his Arch Nemesis - the Blood Pressure Cuff.

All in all, a fine visit I'd say. Once I let go that we will never have that magical discharge visit; that elusive " He is fine; run into the world and play football; we'll check in next decade", I think a may begin to see such visits as very good indeed.

Me and my issues.
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