A Lil' Boy's Journey to Live….

On December 3rd Riley had his 25th Cardiac Cath at Children’s Hospital of Philadelphia . The Cath itself was rather quick .. About a hour and a half. Dr. Rome Only Dilated Riley’s Left Lower Pulmonary Vein. The Right Upper Pulmonary Vein was Not Dilated, and for anyone who is New to Riley’s Journey .. They are the Only Two Pulmonary Veins Riley has remaining. There is Slightly more discussion about Riley’s Radiation exposure. It Always comes back to the Same thing, though, without being Cathed so Aggressively He Most Likely would Not Still be with us! Everything in Riley’s Life carries Risk! Half of the meds he’ll be on after Transplant could cause cancer! Right Now we really don’t have a choice but to continue doing what we’ve been doing since Riley’s Battle with Pulmonary Vein Stenosis Began. ♥ On another note regarding the cath. Again for Anyone who may be New to Riley’s Journey .. It is Believed that Riley has a contrast allergy. We premed the day before and then the treatment is carried over to CHOP. The last 3 Caths Riley has had very minimal reaction if any at all. This was after changing up the meds a little bit. Well after Monday’s Cath Riley’s reaction was Back! After Only about a hour I Looked at him and he was all red and blotchy! Fortunately this reaction doesn’t seem to put Riley into any kind of distress! I was concerned that it was back and a lot quicker than Ever before. Of course I had the docs come in and check him out. I asked if this was going to start affecting him beyond the skin reaction and slight fever at times and the answer was they don’t know. That is one of the reasons he is in CICU .. Because they don’t know how he is going to react or what complications could arise from the cath. It makes sense .. I guess I just wanted them to say that it wouldn’t get worse or cause other problems, but their Never going to say that. After having the reaction for several hours it literally worked its way down his body until it disappeared! It was kinda Crazy but it went Away! We may need to tinker with meds for the next Cath but we’ll cross that bridge when we get there. ♥ Thank You to Melissa, Riley’s Preschool Teacher, for coming for a visit! Riley was Sooo Happy and I Think a little Surprised to see Ms Melissa! I don’t think I’ve ever seen him so awake and interactive after a cath, but Riley Loves Ms Melissa ♥ I also finally got to meet Melanie , Team X-Love and Support for Xavier , Mom today! So Glad! I see a time coming in the near future where we’re going to be neighbors at CHOP. Although with a few other Heart Mommies ♥ Finally .. Woody Wolfe came for a visit. If you don’t know Woody .. He is Truly an Incredible Human Being! Woody sang the Toy Story song .. Which is the Only song Riley will let him sing 🙂 Then we had a Nice visit! Right now, Woody, has a Full beard. Why? For Weston ♥ Even had a Santa Shirt and Hat 🙂 Thank You to Everyone who is on this Journey with Riley and Our Family .. The Journey Continues … ♥


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