A Lil' Boy's Journey to Live….

Archive for March, 2009


Riley and his girl, Jackie, taking a little snooze yesterday!

Riley playing with his piggies today!  Amazing what being home can do…


Sorry that I have not updated!  Things have been crazy!  We did get home from
CHOP last, though.  I have more to say, but not the time to do it right now.
I will update again later!

Heart Cath update ~ Evening Addition

Riley is out of the Cath. lab.  He was done around 2.  Dr. Rome had to use cutting
balloons on two of the veins he had previously stented.  He then put a stent into
the 4th pulmonary vein.  So Riley now has stents in all four of his pulmonary
veins.  Not exactly a great day.  Dr. Szwast did say, though, that his pressures
were down from before.  That is the pressure of the blood going through the
veins.  That is a good thing.  She also says the fact that one of the veins looked
great is good.  Yeah….this is called the doctor trying to make things sound good.
Anyway…..we basically went back to November.  We can’t move forward again.
We need several months of stablility.  Dr. Rome said moving on to stage 2
at this time would not be wise.  If Riley veins obstruct again after stage 2
it makes things more difficult…
So of course I asked what happens if in three months he needs to be ballooned
again?  He said…..I promised you I would do it!  Even though I dont want that
to happen….it’s comforting to know he’ll do it if need be.
Right now we are staying for the night.  Riley will get antibiotics and heperin
until tomorrow, and then be able to go home. 
He is VERY cranky!  It will certainly be a long night, but at least it’s only one.
Thank you all for your support!  As you see…the journey continues……

Heart Cath – Update 1:00 PM Info

Well Riley is in the Cath lab as I type this.  He went back at 10:30.  Our conversation
with Dr. Rome that I was so worried about having actually went pretty well.
He said that Riley looks good….from the outside….now he needs to see how he looks
inside.  I did tell him that I was concerned that if he had to dilate the vein/veins
that we were using up our chances since he said he would only do it a couple times.
Since he said the stents were kinda a final hope.  He said….I did say that, and I am sorry!
What I should have said is we would then have to try something else.  He said he is not
a quitter and will not quit on Riley.  I cried.  I told him he has no idea what it means to hear
him say that!  Obvoiusly, all depends on whats going on inside, but to hear him say he’s sorry
and that he won’t quit on Riley meant the world to me.
Riley may go back to the CICU after the Cath, but Dr. Rome said not to think twice about it.
We’ll see, though, he may not.
The nurse did come out with one update.  I was not here, but she told Darren that he looked
good, and at this point they were just dilating the one vein.  That would be great if its just one!
Dr. Rome said he may stent the 4th vein….so if he doesn’t feel he needs to do that…even better!
Again…..he is still in the Cath.  Things could change, but that is whats going on to this point.
I will try to update again…in a little while…if not…Chris or Granny will.
Keep PRAYING!!!!!

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