Finding Dory and Birthday

It has been another good day. Thank you for all the birthday wishes.. I absolutely feel another year older. Pixar did a special showing of Finding Dory this afternoon for all the kids in the hospital. Owen won't be able to leave his room... EVER... so we watched it on the tv in his room. Child Life brought by a personalized drawing of Nemo from the Pixar Illustrator just for Owen. The movie gave us some great laughs.

Owen continues to be stable.. but I am reminded by the team daily how very sick he is.  He has gotten very Neutropenic.  He is kinda like bubble boy and is very susceptible to infection his body wouldn't be able to fight since his WBC is so low.  We stopped one of his antirejection medications (Cellcept) today to help bring that count up to a "healthier' level.  I'm actually kinda of glad he is still on contact precautions from the Pseudomonas so that the nurses have to wear gowns, masks and gloves to protect Owen from outside germs as well.  We are not accessing his central or art lines unless we absolutely have to.  Prayers that all infections stay far away! 

Everything else is status quo.  He asked for breadsticks and buffalo wings tonight.. then decided he couldn't eat it when he got it.  Still no appetite even with the increase of Milrinone.  We will continue to inch up on his dose to see if it helps with GI issues.

It all comes down to finding balance with fluids, staying healthy and keeping things stable until he gets a heart.  We got this!

The kids head home from the lake tomorrow.  They had such a fine time with cousins!  I'm sure Carson is going to be thrilled to see our munchkins again.