A Lil' Boy's Journey to Live….

6/1/09-3

Soo Riley’s Cath took about 4 1/2 hrs today.  Dr. Rome did balloon all four stents…again.
He did have to use a special cutting balloon in Rileys upper right pulmonary vein.
This vein is always the first to get obstructed.  Anyway….this special Cath that he used
actually extends out past the stent, and because of that caused some damage to the vein.
There also was some leaking of contrast.  The other right vein showed some narrowing
beyond the stent.  That is a little scary because so far the narrowing has continued to stay
around the same area,,,,where the veins enter the heart.  If it starts to spread towards the lung
we are in alot of trouble.  Hopefully….this will not continue.
Dr. Rome also placed a stent inside of Riley’s shunt.  This is really to buy us some time before he
would need open heart surgery to replace it.  We actually are back on the track of possibly doing
the stages again so maybe the stent will hold until the shunt can actually be removed. 
This will not happen any time soon, though.  Riley’s veins have to be stable….needing no intervention
for between 4-6 months before we can move forward.   So as always we will continue down the path
we are on.
Riley did go back to the CICU today.  He still had the breathing tube for about 3 hrs after the cath.
Dr. Rome said Riley’s lung was hazy due to lack of blood supply.   Plus there was the issue with the
contrast, and the damage to the vein.  He is off the breathing tube now.  He is very doppy still, but
handling things very well.  He did have a fever of 101. when he got to the CICU.  Gave him Tylenol,
and it still went up to 102.  So he got covered in cool towels which seemed to bring the temp down.
The thought is that he is having a reaction to the contrast since he also spiked a fever after the last cath.
Right now he doesnt have a fever, and hopefully it will stay that way.
Soooo…for tonight we are in the CICU.  I have nooooo idea what tomorrow will bring.  We could step
down to the CCU or maybe…possibly go home.  Im leaning towards going to the CCU.  I dont see
him being discharged tomorrow, but I could be wrong.  time will tell!
I know this picture is not pleasant, but it is when
Riley came out of the cath, and still had the breathing tube.
 
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