Saturday, May 12, 2012

Days Negative 6 and 5: A Very Unrestful Shabbat

Lighting our new electric shabbos candles did not bring any rest to room 935. Ezra is feeling the effects of the chemo pretty hard with steady vomiting and diarrhea. He also tested positive for a bacteria in his stool, which we are treating with antibiotics. We are up every hour and a half or so at night with him changing diapers and clothing. He is still in pain from the central line. He now has a PCA where we can push the button to give him extra pain medication. The surgeon stopped by to discuss swapping this new type of line for the old kind if he continues to be in so much discomfort. That will require another round of anesthesia and another recovery period and the chance that he might be in the same amount of discomfort, so we are sitting tight for another day or so in hopes that the pain starts to alleviate.

He also had a bad reaction to a nausea medication today that caused him to rage, so they had to give him a sedating drug to calm him down. He's been sleeping ever since. Hoping he doesn't wake up at 2:00 AM looking to hang.

Ezra also has stopped eating for the most part, which is to be expected. But when he was eating, Ezra had a chef, Chef Pnina, catering to his every need. Chef Pnina runs the Sloan-Kettering pediatric food service and is incredible. She met with us when we first arrived and has been determined to make Ezra everything he likes, just the way he likes it. She took Bubbe's recipe for salmon croquettes, added veggie puree and all, and made it just like Bubbe. She went out and bought his favorite piccolini wagon wheel pasta and sent up an entire pint of Hagaan-Daaz vanilla ice cream. None of that half-fat ice cream they give out for Dr. Ezra. It's a comfort to know that when he is ready to eat again, Chef Pnina will be here cooking up his favorites.

But what brightens us up the most is the steady stream of emails, texts, cards, and presents, letting us know we're not alone.And after shabbos ended, we got news that a group of Evan's bike commuting friends have gotten together to help pay the fees for our room at the Ronald McDonald House.  Can't find the words to adequately express our gratitude. Thank you to all.