Tuesday, October 18, 2011


Just when I thought I had things under control, everything went out of control. Annabelle got a fever on Friday night and we have been in the hospital since. Fever and neutropenia is nothing new. It happens every time Annabelle's counts bottom out. The worst of it came on Saturday morning. Annabelle took some oxycodone for pain and then they handed her Tylenol for her fever. As soon as that hit the back of her throat she screamed in pain and started throwing up blood. Since that moment, she hasn't swallowed anything. Not a single thing. Not even her own saliva. She spends the entire day and night spitting and gagging and spitting some more. We go through several boxes of kleenex every day and empty buckets constantly.

All of the pain and swallowing issues are from radiation. Her skin is badly burnt so I can only imagine what it feels like to have that kind of damage in your throat!

A few days ago.
We have the wound team taking care of her burn now so hopefully we can atleast keep it from getting any worse!

This is how we spend most of our time...

Atleast she could muster up a smile for a picture with her daddy.

To control the pain she is now on a PCA. It gives her a continuous drip of morphine and she can push the button for break through pain relief. She still has bad moments, but the morphine also provides some comic relief. When she's good, she's REALLY good!
Yesterday she even played in her spit. She would try and make designs as she spit it out. Then she'd suck it up in a syringe and squirt it back out.
Like a mad scientist.
Today she has moved on to playing with the suction. As I am typing this, she is spitting in her hand and then suctioning it out of her hand and watching it go all the way through the tube and into the bucket. She started a steroid to bring down the inflammation in her throat so hopefully she will be able to swallow again soon (within a day or two maybe?) and we won't be swimming in spit anymore.

A few other random things.....
The steroid has already made her mean. She is up and down like a toilet seat. She goes from goofy morphine funny to demanding random things and yelling in 2 seconds. Thank goodness she will only have to take them for 4 days!

Right after they put her to sleep for radiation and I left the room, she stopped breathing. But the anesthesiologist assured me there was no need to worry, he was able to easily breathe for her. Seriously? Thanks sleepy doctor. I won't worry next time...NOT! But it wasn't too bad, they just had to bag her, no intubation. Very minor, ya know.


Montana Brandts said...

Poor little girl... she breaks my heart!! I can't even imagine how hard this is for her & for u Sally! It's sad for me to sit by & watch I can't even imagine what it's like for u!! Annabelle is such a strong brave girl!! I love to see her smile!! I love u guys & ur in my prayers daily. Let me know if u need anything, I'm here for u!! Lots of love!!

Shannon said...

What a sweet girl. I can only imagine how much that burn feels. Poor girl! Love you!

Rachel said...

Oh Sally, oh Sally, oh sally! I'm just heartbroken for you. I don't think there is anything much harder in this life than watching our children suffer. Praying hard for you and yours. XO

Anonymous said...

I just keep thinking October 21st, October 21st, October 21st.
Keep fightin' the fight!
cousin Jodi

Crystal and Skyler said...

Im sure the thought of the anesthesiologist being able to bag her easily brought you comfort....ya right! Those pictures break my heart. I just want to cry for her. It makes me so sad to see the things our little ones have to go through, especially stuff like that. The wound team is awesome so I hope they can help it heal quicker. I pray she will get relief from her burns so she can swallow again. You have such a strong family!

AMcGrew said...

I hate, hate, hate Ewing's!!! I'm so sorry that you and Annabella are going through all this. I'm praying for you guys. You have an amazing daughter. She is a such a good example to me and my Jason.

Jacob said...

Sweet Annabelle, you're so strong and brave and beautiful! Sally, oh my goodness I'm so sad for you to have to go through this! These photos make me cry... I'm so glad that radiation is all done! I hope she feels better quick and those burns on her neck heal fast.