A Lil' Boy's Journey to Live….


Today Riley visited with both…Pulmonary and Cardiac Transplant teams. We see Cardiac every 2 weeks and Pulmonary every 4.
I guess the good thing would be there really isn’t much to report medically! Riley’s pulse ox was in the low 70’s……..even high 50’s-60’s in pulmonary but HELLO that would have alot to do with why he is listed for transplant!
Anyway….When talking with Dr. Goldfarb we did discuss post transplant some and he had said that new reports had been published regarding survival post heart-lung. The last update was like 1998! He said that there had been great improvement in Children Riley’s age group as far as survival rates. He wouldn’t throw out any numbers (Smart Doc) but told me to go to this website that would give me all the numbers. Thank you, but no! Not now anyway….♥
Riley then saw Dr. Hanna. He is NOT scheduling a Cath!! Not this visit anyway! Does make me a little nervous when we start going off course cause last time veins started disappearing! Like Dr. Hanna said, though, there is no good answer, but he feels at this moment if he were to send Riley into the Cath lab and he were to Stroke that he wouldn’t be able to justify having done the cath that lead to the stroke. I get it. He actually told me that I get it in my Head, but that he gets it in his Head and his Heart! Sooo….ok then!
We will go back in 2 weeks and take it from there! Unless.. of course.. Transplant ♥ November 2nd will be one year that Riley has been waiting! I think he has done his time on the list and needs a chance at Life Now ♥
One last note…..Please keep my Fellow CHD Mommy Chris in your hearts and prayers ♥ Yesterday her Beautiful Baby Girl Emma lost her fight against Time! Emma was waiting for a Heart Transplant. I have cried for two days over the lose of Emma and she is a child I’ve only ever seen from a doorway, but I just can’t imagine the pain in her Mother’s heart….Or maybe I can and that is why my heart bleeds for her ♥ No child should be born having to fight to live like lil’ Emma and Riley and Soooo many other innocent children, but to then loss that fight ….Let’s just say…I have Alot of questions for God one day ♥

Thank You All…Always ♥



Riley’s visit to Pulmonary…..Mike (N.P.) and Debbie..Social Worker

Dr. Goldfalb with a Not So Happy Riley and Mike



Riley and Dr. Hanna…Being Silly As Always….


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