Tuesday, July 8, 2014

The Birthday Roller Coaster

There is a mural outside of the PICU that depicts a child on a roller coaster with her physician.  It is fitting for that location.   On rounds this morning, the neurologists had some tough news regarding the severity of Maggie's brain injury and the possibility of another clot.  It was really scary and left me a mess.  It was just a few hours later though that she was rocking her swallow study and being cleared to eat whatever she wanted and I found myself rejoicing again.    It feels like these emotional swings are becoming our norm. 
I am going to try and summarize our day pretty quickly because I am having some internet challenges tonight. 
The Good: 
*Maggie appears to be more alert and is having longer wake times.  
*She is eating well and loved her cupcake this afternoon even if she wasn't a fan of being sung to. :)  
*My other kiddos have returned home safe and sound and were able to celebrate their sister. 
*Her digestive tract is moving again and I seriously think her swelling went down some in the hours after that.  I know she has to be feeling better. 
*They removed an arterial line that was causing her some discomfort. 
*She was able to tolerate both PT and OT today.  
*WE CELEBRATED HER BIRTHDAY!!

The Challenging (Prayer Requests): 
*There is possibly a spot on her lung that could be clot related. 
*She is using her left arm and leg less.
*She cannot track passed midline to see her right visual field.
*We still have no definitive cause on why she is clotting or why she bled.  This keeps us from being able to prevent this from happening again. 

We continue to be blessed by the outpouring of love from our community.  Maggie had a special visit today from members of the team who traveled with me when I first met her.   She holds a special place in their hearts and they traveled 10 hours round trip in a single day to spend her birthday with her.  The highlight of my day was getting to sit around a table and just hang out with them for a few minutes. 

Here are a some pictures from Maggie's birthday celebration.  Thank you to everyone who helped make it special and to all of our friends who continue to hold us up.  





1 comment:

THEPINKQUEEN HRH PINKY said...

Dear Lord, we praise you for the positive things that have happened. I thank you that she was able to spend time with family and special friends and be aware of what was going on.

Lord reveal the cause of these bleeds and how to treat them. Be with the drs. And provide answers to them so they can provide a treatment plan.

Be with Trent and Ginny and calm their fears. You alone oh Lord are the Great Physician and I ask you to touch this child with your healing hand.

We praise you in advance for what you are doing in Maggie's life. Thank you for your love and grace. In your name, Amen