A Lil' Boy's Journey to Live….

Archive for December, 2013

Epstein-Barr Has Presented Itself in Riley .. ♡

Update .. Cardiology called on Wednesday and the team has agreed to cut Riley’s Lasix dose in half. They actually think he may be a little to dry. So Bye Bye night time diuretic  
There also were some findings through Riley’s labs that weren’t so wonderful. Riley is Positive for Epstein-Barr. This is a virus that Riley is at a greater risk for because he is immunosuppressed. What is Scary about this virus is it could cause PTLD or Post Transplant Lymphoproliferative Disorder. Currently Riley isn’t presenting any symptoms but that also isn’t uncommon. For right now we are aware of what to look for should Riley become symptomatic and in January CHOP will check Riley’s EPV load again. Today it was at 125,000. In a perfect world that number will go down. If it does not and should it rise they will start with adjusting Riley immunosuppression medications. From there a CT scan to check for PTLD. 
Not the news I was expecting to hear. Yet not completely surprised. When you are going through the Transplant process you learn about the different medications and the possible side effects. A lot of Riley’s meds carry with them the risk of life threatening side effects but when you are given 2 choices Death or Hope I think many will pick Hope like we did! Right now we are living on Hope! So we Journey on and hold onto Hope that Riley will too Battle through this and come out Continuing to Beat the Odds! ♡♥

~ http://en.m.wikipedia.org/wiki/Post-transplant_lymphoproliferative_disorder

Check Up With Cardiology on Monday .. ♥

Riley’s appointment with Cardiology went good. They are happy with his numbers especially his BNP being 42! They are also going to discuss lower his Lasix dosage with Pulmonary. His echo and EKG also looked good. 
So as long as no issues arise we will see both teams again in January .. ♡♥




                        I See You ..

Riley is Finishing Up With Home Nursing .. ♥

Soo .. Riley will be finished with home nursing at 7am Monday. Back to Mommy and Daddy doing all of Riley’s care. Seriously though .. we did it the first 5 years to get him to transplant .. So we’re just going back to the way it’s suppose to be .. ♡♥

FYI .. Visit Riley’s FB Page to see all of the Wonderful pictures from his Make a Wish Trip! Truly an Unforgettable Experience!


A Hero Meets A Hero .. As Spiderman Said .. ☆

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