Monday, April 20, 2009

update #1

So the cath is over and was almost 4 hours.... A little more than the 2 hours planned.
Here is a really quick reason why....

His heart is great all preasures are and were they should be, all measurements taken where very good. ( that is the good part )

Soooooooo..... They found something in his cath that they didn't really understand. ( really, with my kids, that is so weird!!!....lol NOT)

Hunter has a very rare ( never seen here...) interior jugular stenosis.... so what does that mean????? I am still trying to figure that out. But by the picture that I was given ( I will post later ) imagine your jugular vein that runs down your neck.. imagine it the shape of a hotdog... ok... now ( higher up that anyone has seen here there is a pinch , a very drastic narrowing.
So if you are still imagine the hotdog half way down on the hotdog imagine it to be the size of a small piece of tube about the 10th of the size it should be.......WOW...... how did they catch it you ask????? well Hunter had a few extra veins that seemed to coming out of now where, so when they followed them up SURPRISE.... and because this is not in the chest but in the neck.. they had to call Neurology, and they had to come and do an assessment.... Hence the extra time!!!!

So needless to say we don't know what is going on right now. but this is not the best news. but I have been told that surgery will have to be done on it, but the surgeon doesn't think it will be before the fontan.... FUN, FUN........

And on top of all this. Hunter woke up with croup... because of being intubated , the tubes rubbed or irratated his vocal cords. so now we are treating that, so right now we don't know if we will be leaving tonight or tomorrow... OH WELL....

BUT, I guess on the bright side, he has no symptoms of the jugular stenosis, so they think that is good!! but this means that he will need a MRI ( which is more sedation.. general... ) We have to make sure that this doesn't affect his brain. Like our Family needs anymore crap!!! NO thanks, I will stick with the crap I already have.... my plate is full.

Other good news. He is ready for the Fontan, Now it is just a matter of booking it... But will it be sooner becasue of the stenosis???? I dont know...

Please keep Hunter in your thoughts tonight. I hope we go home....

Drea

1 comment:

  1. Drea -

    I sent you an email this morning - I JUST got the email about this site. I thought Hunter's cath was this morning - I'm sorry I wasn't there to help support you through this. :-( I hope he's doing better now. Was thinking about you guys all night - apparently I was a few days late! :-(

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