A Lil' Boy's Journey to Live….

Archive for June, 2009

6/24/09

Riley has been entered into a cutest baby contest at a local TV station.  The grand prize is $5,000!!

 

Please follow the link and vote after July 6th!!  Thanks:)

Send this link to friends and they can vote for your baby when voting opens July 6th!

http://beautifulbabies.trb.com/wphl/babies_home_gallery,0,6338980,permalink.ugcphotogallery?u=clearlycarol

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6/19/09

Here are some pics from last night at Jackie and Dennis’s house.  Thank God for Dennis…..he fills my photo albums for me.

Also Thank you, both, for the company and good food this wk.  When Darren works all day…it does make for long days here.  Thanks for the rescue:)

 

6/3/09

Sorry I have not updated!  Riley is home from CHOP.  He was discharged last night.  We didn’t think he was being discharged till today, because of the complications during the Cath, but the docs felt comfortable with Riley going home.  It was just weird to be in the CICU one day with Riley hooked up to a ventilator, and the next day moved to the CCU, and able to go home.  Riley does always pull through though!  GO RILEY!!

Here is a pic from when Riley was in the CICU, and still had the fever.  We were using cool towels to help bring down the fever.

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.
 

6/1/09-2

Riley waiting…..like a big boy…to go in for his Cath!!

6/1/09

Riley is in the Cath Lab.  We have only had one update so far, and Dr. Rome was dilating Riley’s upper left pulmonary vein.  That wasnt even one I thought was going to need dilation so that goes to show that you never know until they get in there.
Dr. Rome did tell us in our consult that Riley is outgrowing his shunt that was placed at his first open heart surgery.  He is going to attempt to place a stent in the shunt today.  This will buy us some time before Riley would need open heart surgery to replace it.  Im not sure how much time, but I will ask in our consult at the end of the cath.
Sooo….that is pretty much all we know right now.  Dr. Rome was sure to tell us that this a serious procedure.  Yes…it’s not open heart surgery, but it certainly, by no means, is risk free.  Hopefully, though, our Riley will pull through, like he always does, and we can move forward.
On a totally different note……..I have to put a huge THANK YOU out to my sister Terry.  On Friday she took Darren and I to a Phillies game.  It was our gift, she says, for being Riley’s parents for the last year.  Anyway…it was a good time!  We didn’t last very long in our nose bleed seats….to much anxiety, but I/we had a good time all the same!
Thank you, also, to my parents for watching the kids.  I know Mary Kay was a little nervous about Riley’s feeds and meds, but everything was handled beautifully!!  Thank you to all of you:)
Until later…..please Pray for Riley!!!!!!!!!!

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