A Lil' Boy's Journey to Live….

Archive for September, 2012

♥ Riley Unbelievably Had His 24th Cardiac Cath On Monday 9/24 ♥

On Monday .. 9/24/12 .. Riley had his 24th Cardiac Cath ♥
The Cath went as expected. Only the Left Lower Vein was dilated. Not dilating the Right Upper. Those are Riley’s two remaining pulmonary veins. The veins are actually outgrowing the stents. Unfortunately there isn’t anything that can be done. Kinda like Riley’s Shunt that he outgrew over three years ago! Its stented also but it should have been removed before Riley even turned One! At this point everything comes back to Transplant! He needs it! ♥
I spoke with Dr Rome post cath and he just can’t believe that Riley is still Waiting! Also stating that Riley certainly takes the prize for the most caths he’s performed on one child! I also Inquired about Riley’s Collaterals. There are Lots of Them! I said .. Collaterals are good Now but Not when its time for Transplant! Dr Rome said .. Perfectly Put! They are helping now with compensating for the veins his lost but when its time for Transplant they are going to be a Major bleeding issue! Ugh …
Later in the evening I actually had a chance to talk to Dr Spray. Riley’s Surgeon. I haven’t spoke to HIM about Transplant since Riley got listed. He Agreed that the collaterals are of Great concern! To be able to remove Riley’s Heart and Lungs and Control the bleeding while transplanting the donor organs is going to be the Most Complicated part of the surgery. Then to control the bleeding after the transplant. He said Riley may actually need to go into the cath lab after transplant to address all the collaterals. Ugh… It was a Hard conversation to Swallow but I’m Sooo Glad We had it!!
Riley Does Continue to Amaze Some of the Top Doctors in the Field! He Needs to Continue to Defy the Odds … Through Transplant and After … He Deserves to Live as He Has Won Every Battle to Date … He is a Warrior With a Lot of Fight Left in Him ♥

image

image

image

image

image

image

Advertisements

♥ Change of Plans ♥

Just had one of those Heart Dropping Phone Calls … At least while it rang and when the person said who they were!!! It was a 215-590-???? number.. which is CHOP!!! TRANSPLANT?!?!? NO!! Calling to Cancel Tomorrow’s Cath!! Seems they have had 4 emergencies in the CICU this evening alone! Pretty much meaning there are No Beds! They discussed Cathing tomorrow and having Riley recover in the PICU but arent comfortable with that! They ARE Comfortable in having Riley wait until next week for his 24th cath. That way he can recover in the CICU under Their Care!! I agree! Downfall is having to go back to CHOP for pretesting AGAIN after doing it today and having to premed Riley again!
Upside as Dr. Montenegro said … Maybe Riley will get another GOOD Offer for organs Before the next cath… Making All of this happen for a Reason! (I Won’t Hold My Breath!) Until I know More… Thank You all for Your Continued Love and Support for Our Riley ♥

image

Dr. Hanna Being Silly with Riley During his Intake Appt. ♥

♥ A Day on Broadway with Mary Poppins ♥

Wow!!! What a Wonderful Day at Mary Poppins – The Musical ♥ Katie ~ Your the Best!! Thank You for EVERYTHING you did to make today happen!!
Thank You to All the Cast and Crew at MARY POPPINS at the New Amsterdam Theatre ~ Literally from helping us unload the truck … Watching the truck during the Show and After..Saving Us from having to pay for parking … Taking us to our seats … Bringing my boys Gift Bags … Hanging out after the show … I Could Go On and On….. ♥ Not Only is the Show Amazing but so are ALL the people that work there!!! XoXo to You All ♥

image

image

Thank You to My Dear Friend Katie Nanni for Making the Day a Reality ♥

image

Bert ♥

image

Mrs.Banks ♥

image

The Banks Children♥

image

Mary Poppins ♥

♥ With a Lil Hope .. and Magic.. Anything is Possible ♥

This is the Magical Creation Done By Shawn Van Daele as Part of The Drawing Hope Project ♥ We are So Honored to Have Our Riley Being Part of Something So Incredibly Amazing ♥

image

♥ Just a Beautiful Picture of Riley ♥

image

♥ Beating the Odds..Everyday ♥

Tag Cloud