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Wednesday, May 30, 2012

Wednesday May 30th, 2012 MRI

Usually when I sit down to write the blog and update everyone on how Ella is doing, I have a starting point in mind, or a key point to get across.  Right now I feel mentally drained and don't even know where to start.  I feel like I've been repeating myself for the past few weeks because it's still the same issues that are not resolved.  So forgive me for restating that I am still frustrated, mentally drained and tired of wondering what is really wrong with Ella.
Ella got this idea from her new friend Kennedy!

I think maybe I am too sensitive to when things go wrong, so I want to be sure to be grateful for the things that went right today.
Things that went well:
Grandma and Grandpa came to clinic/MRI
Our Nurse called the MRI department and got a more accurate time for her to be NPO (without food). Originally they said midnight and her test wasn't scheduled until 1:45pm.  She is 6 and on steroids.  That is 14 hours w/o food or water. She got to eat breakfast at 6:30am.  Thank you Nurse T!
We took Ella to the zoo before clinic to help ease her nerves.
Clinic accessed her port and not the MRI department.
We arrived early for the MRI and they were ready for us.
Ella wore her sleeping mask for the MRI and it made her feel better.
We spent some time talking with Child Life.
Ella's Doctor really cares about her, and me.
Traffic on the way home from clinic was "light'.
Grandma and Grandpa at Clinic

Things that could have gone better:
The spring on the garage door broke this morning as we left.
Every school in the area was at the zoo today.
The MRI team had a problem with Ella eating breakfast and gave me a little scolding and speech to  remember to not feed her after midnight in the future.
I was not allowed to go into the MRI room with Ella.
The MRI team was not clear on where to wait for Ella to be done.  They told us it would take between 2-3 hours to complete the test and after 1:40 minutes they called my cell phone asking me if I left the building because Ella was awake and screaming for me.  This statement made me feel like shit.  Like I would actually leave the building while my child is under.  Didn't you just have to talk me out of demanding to be in the room with her for her MRI? All I could think about was my baby hysterically crying because I wasn't there.  This is not a good feeling.  There isn't much I can do for her through this journey BUT "be there", and I missed it.
The MRI team left Ella in her PJ's and while under, she soaked them.  Leaving her with no clean clothes or underwear. This might be something to mention when calling the parents to go over the procedure? Maybe? I probably should have thought about it when they asked if there was metal in her PJ's.
Ella had to get medication to calm her when she woke up and I was not there.
They gave us a boys blue hospital gown with rockets on it for Ella to change into and my princess had a melt down. After being called a boy when she lost her hair to chemo, she will not dress any other way than "girly".  Also, this was not an discussion I wanted to have with a 6 year old who was coming out of anesthesia, was soaking wet, trying to balance her in the bathroom while wiping her down and holding her blankie and her at the same time.  I took off my shirt and gave it to her to wear as a dress and put my zip up hoodie on. By this time it was 4pm and clinic was still so busy we waited another 30 minutes for chemo. That really isn't so bad, but at this point I really needed to get Ella to eat and I desperately wanted the day to be done.
The MRI team had to access her through her hand and her hand was swollen and sore to the touch all night.  She wouldn't even lift it to eat, and this girl was HUNGRY, so I know it must have hurt.
I desperately wish I could have said this long prayer that would really express my feeling to God about being with Ella so she wouldn't be scared, but all I have been able to squeak out the past few days is "Please be with her and let the MRI come back clean". At least I know that He knows all my unspoken words and thoughts.
Ella going in for the MRI

Thank you to my friends and family that keep lifting her up in prayer.
I ran a half marathon this past weekend.  Whenever I felt like I couldn't make it, I just repeated "If Ella, Carrie and my Dad can out run cancer- I can do this."

Results should be back tomorrow.  Dr. S is confident that they will be fine- which is great, but answers would be nice too.


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