We Are Home!

Raylee was discharged from the Immunocompromised Services Unit (ICS) today. Last night she still had a slight fever and the nurse said she may need to stay until Friday but it was up to the oncologist. Raylee had a great night and her fever improved so the oncologist said we could go home! For the last 2 days Raylee cried that she wanted to go home but today when they said we could she said she didn't want to. She is felt well enough to realize she as a TV to herself and room service, and can eat in bed. At least we left the hospital with her enjoying it.

Her blood and urine cultures came back negative meaning there were no bacteria growing. Raylee was also diagnosed with neutropenia which is when the neutrophils (most important white blood cells) are extremely low and the ability to fight infections is gone. This means Raylee is still considered immunocompromised and will still receive antibiotics intravenously through her central line or Broviac. She will receive this 3 times a day.....and I will be the one giving them to her. I was nervous at first but a nurse showed me how to do it and it really isn't difficult. I feel like a pro! If she needs more rounds of Chemo we are requesting intravenous antinausea meds. I was nervous to have those before but since I'm a pro now it would make this experience a little easier and a little more bearable. Just knowing how easy it is to give an intravenous med gives us so much hope! I feel like I am in nursing school; because I am learning so much about the body and how to do some medical techniques. I took Biology in college and it was extremely interesting but when it came down to it I didn't have the stomach for it. I never would have imagined I would be able to give meds through a type of IV line that goes to my little baby's heart. Even staying in the hospital has been a huge step for me. Before, hospitals would make me queezy just stepping foot in them! It's the weird smell and knowing there are sick people all over, germs, blood, and all the yucky stuff--just makes me nauseous. However now....I still feel like there's germs everywhere in the hospital and I wash and sanitize my hands like a paranoid person, but I don't look at the patients as being ill--maybe because they are all children--now I see them as the sweetest little kids who are incredibly strong and courageous! They are true fighters who have a level of endurance and coping that many adults lack.

Since Raylee's immune system is non-existant right now, we are asking that no one visits her. We are so sorry about this....please know we love you and you are more than welcome to visit when she is feeling better. This is really hard on her because she is really out going and loves people. She misses her little friends at church and always asks to go, she just loves that nursery! When one of us goes somewhere she asks if she can go...and is saddened when she is told 'not this time' over and over. We explain to her why she can't leave. To make up for our lack of play, we are asking you to play extra hard for us this summer and enjoy it like no other!