Monday, December 5, 2011

Yes, I am a crazy Mom.

Mallory ended up getting a dose of morphine last night, she just could not calm down. She had this terrible cry that I have never heard in my life. It just broke my heart. She slept really great after that 3-9 which is the longest she has ever slept.

We also went over with the doctors about the dreaded word "discharge". They brought up how we might go home today, Didn't you just say my baby had cancer and your talking about sending us home? I pretty much had a breakdown everytime someone would come in. I finally just said, there is NO way I am thinking about going home until we get the pathology report, the MIBG scan and the bone marrow scan are complete. I want a game plan of everything before they even THINK about discharging us. We are not even close to being comfotable with the broviac, changing caps, flushing the lines and changing the dressings on it.

We would LOVE LOVE LOVE to be back in our own house, with our chatty 2 year old and our obnoxious never ending meowing cat but I have to be prepared, we have to be comfortable. I'm glad I finally got the courage to portray how I was feeling and express it with words. But tonight we are totally working with the nurses and they are going to get us to be pro's before we get home.

They are currently setting up the homecare system which will include our medical testing supplies and also a nurse that will come and help us out also. Which I am so VERY thankful for.
Still waiting on the pathology report which is the HUGE report that will tell us exactly what we are dealing with here. I hate waiting, this is the worst part, not knowing. We were also just informed that Mallory will start iodine (to protect her thiroid) on wednesday, then the radioactive isotope injection (and no she won't glow because of it, yes, I totally asked) on thursday and the scan on friday. Also bone marrow will be friday as well. (I was off on the dates, we've been told so many different things)  So we have a week of waiting, Ryan returned back to work this week so I have full day of visitors tomorrow and some on wednesday but I am looking forward to having company! Thanks Everyone!

Ohhh and we hit 10,000 views! WOW, Just WOW! Thank you everyone for your continued support!



  1. Way to stick to your guns! You and Ryan are Mallory's best advocate! :0)

  2. Good for you- she's a tiny girl, and you need help and to feel comfortable. The nurse will be wonderful help, and a great sounding board/friend/lifeline. If you don't like the first one, get another. We have an doll, that really helped and became an advocate for us with the doctors office and their front tape.... Hang in there! Chris Hope the baby has a better night, maybe she had a bad bout of gas in her belly. That happens a lot after surgery. Hugs!

  3. I wanted to let you know that you and my family are praying for you, I orginally heard your story on Facebook from a girl I went to school with, and was shocked to find out today from my mom to know that I used to go to the same church as Ryan's family (although I'm much younger than him). I have a son too, and your story should hit home to ANY parent.
    Hang in there. *hugs*

  4. This brings me back to having my little girl on Sept 23 and then being discharged from the hospital. I was a nervous wreck and couldn't believe they were trusting me to take home a healthy newborn. I can only imagine how terrifying it would be if she had medical needs.
    Hang in there, you and Ryan can do this! I'm sure it will be scary but you won't be alone. I'm sure lots of people will be there to help!
    -Rhiana, PA

  5. You Are such a Great mom and i wish i could be there with you every day!!
    I love you like my own kids!!
    I have cryed so many tears for you to be storng for mallory and Grandma told me how well you are holding up , i guess better than me working every day and i can't get up there to see you.I will be there as soon as i can Ashley if you need any thing i mean any thing you call me.

    I love you and your family so very much..

    Aunt Linda