As you may know, we try to keep Rafi abreast of all her treatment options as we go through this journey. So as we get ready to leave the hospital, we have had discussions with Rafi about it. After several heated conversations, Rafi has decided that she wants to stay in the hospital for a little longer. We know this because she decided to spike a fever today of 101.1. That earns us a two day ticket on 5D. Clearly she is adamant about staying put where there is room service and people come to see her all the time and she is the center of attention. Tomorrow or Tuesday we are going to have another esophagram where Rafi will drink some more barium and have a lot of x-rays to see if the dilatation was successful or not. She has been throwing up a lot of mucus and coughing a little when she drinks so everyone feels this is the right thing to do.

Rafi has become very attached to the idea of a nurse. Yesterday when we were going to wash her legs and put on new bandages, Rafi said:

Rafi: “OOO, bath and bandage change, who is going to help us?”
Jackie: ” No one pookie, daddy and I are going to do it.”
Rafi: ” No, call the nurse”.
Brett: “It’s alright Raf we can do it, it’s easy today”.
Rafi: “No, call the nurse, we need help”.

Due to the fact the our nurse yesterday was new to us and was unfamiliar with Rafi’s case we decided to move ahead without help and we washed and changed her bandages. Rafi’s big thing now is to ask us to call the nurse all the time. After she throws up, she asks us to call the nurse so they can see the product of her work. She just cracks me up.

Anyway, Rafi is now producing more mucus and throwing up a little more again. Plus, she spiked the fever. She had an xray today to look at her lungs and from an untrained eye, mine, her lungs don’t look any worse than before and in some ways they look better. We hope this is just a little bump in the road on the way to her full recovery from the pneumonia. So, really what’s a few more days in 5D?

Until tomorrow…………